Assessing the Potential of

National Strategies for

Electronic Health Records for

Population Health

Monitoring and Research

Series 2, Number 143

J

a

nuar

y 2006
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Disclaimer

The findings and conclusions in this report are those of the author and do not

necessarily represent the views of the Centers for Disease Control and

Prevention.

Suggested citation

Friedman DJ. Assessing the potential of national strategies for electronic health

records for population health monitoring and research. National Center for

Health Statistics. Vital Health Stat 2(143). 2006.

Library of Congress Cataloging-in-Publication Data

Assessing the potential of national strategies for electronic health records for

population health monitoring and research.

p. ; cm.— (DHHS publication ; no. (PHS) 2006–1343) (Vital and health

statistics. Series 2 ; no. 143)

‘‘January 2006.’’

Author: Daniel J. Friedman.

Includes bibliographical references.

ISBN 0–8406-0607–9

1. Medical informatics. 2. Medical records—Data processing. I. Friedman, Daniel

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health statistics. Series 2, Data evaluation and methods research ; no. 143.

[DNLM: 1. Public Health Informatics—organization & administration.

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Series 2, Number 143

Assessing the Potential of

National Strategies for

Electronic Health Records for

Population Health

Monitoring and Research

Data Evaluation and Methods Research

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention

National Center for Health Statistics

Hyattsville, Maryland

January 2006

DHHS Publication No. (PHS) 2007-1343
National Center for Health Statistics

Edward J. Sondik, Ph.D., Director

Jennifer H. Madans, Ph.D., Acting Co-Deputy Director

Michael H. Sadagursky, Acting Co-Deputy Director

Jennifer H. Madans, Ph.D., Associate Director for Science

Jennifer H. Madans, Ph.D., Acting Associate Director for

Planning, Budget, and Legislation

Michael H. Sadagursky, Associate Director for

Management and Operations

Lawrence H. Cox, Ph.D., Associate Director for Research

and Methodology

Margot A. Palmer, Director for Information Technology

Margot A. Palmer, Acting Director for Information Services

Linda T. Bilheimer, Ph.D., Associate Director for Analysis

and Epidemiology

Charles J. Rothwell, M.S., Director for Vital Statistics

Jane E. Sisk, Ph.D., Director for Health Care Statistics

Jane F. Gentleman, Ph.D., Director for Health Interview

Statistics

Clifford L. Johnson, Director for Health and Nutrition

Examination Surveys
Acknowledgments This project was supported by the

Centers for Disease Control and

Prevention (CDC) Contract

No. 200-2004-M-09141 and Contract

No. 200-2005-M-13604. The contents of

this publication are solely the

responsibility of the author and do not

necessarily represent the official views

of CDC. The author would like to thank

Dr. Edward J. Sondik, Director of the

National Center for Health Statistics,

CDC, and Edward L. Hunter, Associate

Director of the National Center for

Health Statistics, CDC, for their

encouragement, support, and guidance

throughout this project. Additionally, the

author would also like to thank Dr.R.

Gibson Parrish, Dr

. Steven J. Steindel

(CDC) and Dr. David A. Ross (Public

Health Informatics Institute) for their

patience and contribution of time and

advice. The project would not have been

possible without the generosity and

honesty of the ninety-six experts in

Australia, Canada, England, New

Zealand, and the U.S., who provided

lengthy and detailed interviews and who

consistently agreed to answer follow-up

questions.

Twelve experts also provided

thorough and extremely helpful reviews

of earlier drafts of this report, and their

remarkable generosity in donating their

time and expertise is also very much

appreciated. Throughout the course of

this project, experts in the five countries

who had previously been strangers to

the author became colleagues, and

colleagues became friends. Of course,

the responsibility for any errors,

misunderstandings, misrepresentations,

and hare-brained ideas lies with the

author alone.

iii
Content

Acknowledgments ......................................................................................... iii

Summary ................................................................................................ vii

Highlights................................................................................................ xii

Abstract ................................................................................................. 1

Chapter 1. Introduction .................................................................................... 1

Purpose ............................................................................................... 1

Central Concepts ........................................................................................ 2

Chapter 2. Methods ....................................................................................... 5

Environmental Scan of Related Developments ................................................................ 5

Expert Interviews........................................................................................ 5

Chapter 3. Factors Impacting on National Strategies for Electronic Health Records .................................... 7

Population Health Status.................................................................................. 7

Health Expenditures ..................................................................................... 7

Health Systems ......................................................................................... 7

Public Opinion.......................................................................................... 7

Chapter 4. Nation Snapshots: Australia, Canada, England, and New Zealand ......................................... 14

England ............................................................................................... 14

Australia............................................................................................... 22

Canada ................................................................................................ 27

New Zealand ........................................................................................... 33

Chapter 5. Common Themes in Interviews with Expert Informants in Australia, Canada, England, and New Zealand ........ 41

Potential Contribution ................................................................................... 41

Constraints ............................................................................................. 43

Chapter 6. Common Themes in Interviews with Expert Informants in the U.S. ....................................... 49

Potential Contribution .................................................................................... 49

Scenarios .............................................................................................. 51

Constraints ............................................................................................. 52

Chapter 7. Fundamental Issues in the Relationship of National Strategies for Electronic Health Records to Population

Health Monitoring and Research ............................................................................ 54

Definitional Issues....................................................................................... 54

Numerator and Denominator Issues ......................................................................... 54

Overarching Issues ...................................................................................... 57

Success Factors ......................................................................................... 58

References ............................................................................................... 61

Acronyms and Glossary .................................................................................... 71

Tables

2.1 Requested and completed key informant interviews, by country ............................................. 6

2.2 Types of key informants, by country ................................................................... 6

3.1 Population health status, by country .................................................................... 9

v
3.2 Health expenditures, by country ....................................................................... 9

3.3 Health system context, by country ..................................................................... 10

3.4 Health system structure, by country .................................................................... 11

3.5 Health system process and performance, by country ...................................................... 12

3.6 Public opinion about health systems, by country: 2004 .................................................... 13

4.1 National strategies for electronic health records, by country: 2005 ........................................... 39

Figures

1.1 Influences on the population’s health ................................................................... 3

4.1 England’s National Health Service integrated model for information ......................................... 20

4.2 Data flows for England’s Secondary Uses Service ........................................................ 22

4.3 Key elements of Australia’s HealthConnect .............................................................. 24

4.4 Initiatives of Australia’s National E-Health Transition Authority ............................................. 28

4.5 Key elements of Canada’s Electronic Health Record Solution Conceptual System Architecture model .............. 30

4.6 Canada’s full featured Electronic Health Record Jurisdictional Infostructure ................................... 31

4.7 New Zealand’s linkage between health strategies and information strategies ................................... 34

4.8 New Zealand’s distributed Electronic Health Records model ................................................ 36

Apppendices

Appendix 1. Structured Search Criteria ........................................................................ 72

General Considerations for Structured Searches ............................................................... 72

Preliminary Search Algorithms............................................................................. 72

Documentation.......................................................................................... 72

Appendix 2. Journals and Newsletters Reviewed ................................................................ 73

Appendix 3. Typical Interview Guide (English Expert) ........................................................... 74

Introduction and Background .............................................................................. 74

Questions .............................................................................................. 74

Appendix 4. Key Informants................................................................................. 76

4-A. Key Informants Australia............................................................................ 76

4-B. Key Informants Canada ............................................................................. 77

4-C. Key Informants England ............................................................................ 78

4-D. Key Informants New Zealand ........................................................................ 79

4-E. Key Informants United States ....................................................................... 80

4-F. Consultations ..................................................................................... 82

4-G. Reviewers........................................................................................ 83

vi
Summary

Assessing the Potential of National Strategies for Electronic Health Records for

Population Health Monitoring and Research

January 2006

Rationale (see Chapter 1)

Healthcare costs continue to increase.

The media, the public, and health

professionals now recognize that

unnecessary morbidity, mortality, and

healthcare costs resulting from adverse

events and medical errors are serious

problems. The U.S. and other developed

nations are adopting health information

technology as a tool for rationalizing

complicated healthcare systems, improving

the quality of patient care, moderating

healthcare costs, and reducing the

incidence of adverse events. Electronic

health records constitute the core of health

information technology. The U.S.,

Australia, Canada, England, and New

Zealand are all developing national

strategies for electronic health records,

accompanied by substantial investments of

public and private sector funds in

implementing those strategies.

Purpose (see Chapter 1)

The Centers for Disease Control

and Prevention’s National Center for

Health Statistics commissioned this

report to assess the potential

contribution of national strategies for

electronic health records to population

health monitoring and research. The

report focuses on those types of

population health monitoring that

generate health statistics for measuring

the population’s health, rather than those

types of population health monitoring

used to detect health events and diseases

for the purposes of immediate public

health interventions.

Disclaimer: The findings and conclusions in this

report are those of the author and do not necessarily

represent the views of the Centers for Disease

Control and Prevention.

Methods (see Chapter 2)

This study:

1. Reviewed national strategies for

electronic health records in Australia,

Canada, England, and New Zealand,

and especially the implications of

those strategies for population health

monitoring by producing health

statistics and by encouraging

research employing health statistics.

The review relied on reports,

presentations, Web pages, and

articles, which were publicly

available before January 2006.

Structured and directed Web and

literature searches were conducted.

See Chapters 2, 3, and 4.

2. Identified the potential contribution

of national strategies for electronic

health records to population health

monitoring and research and barriers

to achieving that potential. The

identification of the potential

contribution and barriers relied on

interviews with 96 experts with

national and sub-national

responsibilities for strategies for

electronic health records, for

population health monitoring and

research, and for related research in

U.S., Australia, Canada, England, and

New Zealand. The interviews were

qualitative and were conducted via

telephone using structured interview

guides. See Chapters 2, 5, and 6.

3. Delineated fundamental issues that

must be confronted to maximize the

contribution of national strategies in

the development of electronic health

records for population health

monitoring and research. See

Chapter 7.

This study did not explore issues

relating to the potential of national

strategies for electronic health records

for health event and disease detection

for the purposes of immediate public

health interventions, such as case-based

surveillance, syndromic surveillance,

and bioterrorism surveillance.

Key concepts (see Chapter 1)

This report defines the electronic

health record as an electronic repository

of patient-centric data that are

identifiable, longitudinal and preferably

life-long, cross-provider, cross-provider

site, and cross the spectrum of

healthcare, including primary care, acute

hospital care, long-term care, and home

care. In contrast, this report defines the

electronic patient record as the

electronic record of the periodic care

provided mainly by one institution.

Widely accepted definitions of electronic

health records and electronic patient

records do not exist internationally, and

comparisons of different usages of the

terms should focus on specified

functions rather than assuming

comparability based on the terms

themselves.

Population health encompasses the

level and distribution of disease,

functional status, and well-being within

a group. Population health monitoring is

the collection and analysis of data to

detect and describe changes in the

population’s health or factors that affect

the population’s health.

Health statistics are ‘‘numerical

data that characterize the health of a

population and the influences that affect

its health.’’

1 The types of population

1

Parrish RG, Friedman DJ, Hunter EL (2005).

Defining health statistics and their scope. In:

Friedman DJ, Hunter EL, Parrish RG (editors),

Health Statistics: Shaping Policy and Practice to

Improve the Population’s Health. New York City

(NY): Oxford University Press;3.

vii
health monitoring that typically generate

health statistics are reportable diseases

and registries, administrative health data,

and population-based surveys; nonhealth

data sources also provide health

statistics, especially relating to the

influences on the population’s health.

A numerator is ‘‘the upper portion

of a fraction, used to calculate a rate or

a ratio.’’

2 Numerators represent the

aspect of the population’s health being

measured, such as a health event,

disease, condition, functional status, or

well-being. A denominator is ‘‘the lower

portion of a fraction used to calculate a

rate or ratio. The population. . . at risk

in the calculation of a rate or ratio.’’

3

Denominators represent the population

in which the particular aspect of

population health is being measured.

Population-based health statistics require

both a known numerator and a known

denominator.

National strategies in Australia,

Canada, England, and New

Zealand (see Chapters 3, 4,

and 5)

Chapter 4 provides overviews of

national strategies for electronic health

records in Australia, Canada, England,

and New Zealand, including the locus of

responsibilities, current status and plans,

electronic health record definition,

national health information infrastructure

elements related to electronic health

records, electronic health records

storage, patient confidentiality and

participation, patient identification, and

uses for population health monitoring

and research. See Table S.1 for an

abbreviated summary of the four

national strategies.

National strategies for electronic

health records reflect the political,

healthcare and systems, and market

systems of individual countries (see

Chapters 3 and 4). National strategies

for electronic health records also reflect

both technical decisions and political

2

Last JM, Spasoff RM, Harris SS, Thuriaux

MC, eds. (2001). A dictionary of epidemiology.

NewYork City (NY): Oxford University Press;126. 3

Ibid;49.

judgments, which may change over

time. National strategies in Australia,

Canada, England, and New Zealand are

developing and evolving, and passing

through stages of conceptualization,

design, pilot testing, and

implementation. Only England has

moved to implementation of a national

strategy for electronic health records.

Australia has conducted local pilot

testing and is now designing its national

strategy. Canada is conducting local

pilot testing through strategic

investments and is now designing its

national strategy. New Zealand is

conceptualizing its national strategy.

Review of publicly available

reports, presentations, Web sites, and

articles, and interviews with experts,

reveal that population health monitoring

and research is explicitly secondary to

the primary uses of clinical care and

management in the investigated national

strategies for electronic health records

(see Chapters 4 and 5). Only England

has conceptualized, designed, and is

now implementing the use of electronic

health records for population health

monitoring and research: the National

Health Service Secondary Uses Service

has been established to ‘‘provide the

NHS with higher quality data to enable

investigation of trends and emerging

health needs which can inform public

health policy and planning.’’

4 Canada’s

strategy includes communicable disease

surveillance.

Consensus within nations does not

exist on key issues underlying the use of

electronic health records for population

health monitoring and research. These

issues include but are not limited to

whether and how national strategies for

electronic health records should support

population health monitoring and

research, the parameters of patient

confidentiality and participation, the

harmonization of clinical data standards

with population health monitoring data

standards, and the extent to which

4

NHS Connecting for Health (2005 Oct). The

National Programme for IT implementation guide:

Designed for the NHS by the NHS. Guidance to

support trusts when implementing National

Programme products and services. Version 3.

London (UK): NHS Connecting for Health:27.

electronic health records contain

structured data. In Australia and Canada,

consensus has not yet been achieved on

unique patient identification, or whether

unique identification will apply to

residents who encounter the healthcare

system or to all residents.

Potential contributions of

electronic health records to

population health monitoring

and research (see Chapters 5

and 6)

Experts interviewed in Australia,

Canada, England, New Zealand, and the

U.S. identified potential contributions of

electronic health records to population

health monitoring to produce health

statistics and research employing health

statistics. Examples of these potential

contributions include the following.

Integrating healthcare performance

measurement with population health

monitoring, such as the development of

integrated systems for measuring

healthcare system performance at

individual and provider group levels,

with provider and provider group

measurements systematically aggregated

to the population level.

Developing entirely new data for

population health monitoring and

research and entirely new options for

population health monitoring and

research, including:

+ Establishing new disease and health

condition registries yielding

previously unavailable populationbased morbidity and disease

prevalence data;

+ Tracking how people move through

and beyond the healthcare system;

+ Ongoing linking of clinically rich

data with population health

monitoring data from registries and

reportable disease systems,

administrative health data,

population-based surveys, and

complementary data sources; and

+ Using electronic health records as

sampling frames for population

health monitoring and research.

viii
Shifting predominant paradigms for

population health and clinical research,

through erasing current distinctions

between clinical data and population

health data.

Fundamental issues in the

relationship between national

strategies for electronic health

records and population health

monitoring and research

(see Chapter 7)

Numerators and denominators as

necessary conditions

Data derived from electronic health

records may prove useful for multiple

purposes in addition to the clinical care

of individual patients, including

detecting health events and diseases for

the purposes of immediate public health

interventions, identifying adverse events,

monitoring the quality of clinical care,

and managing the provision of health

care and health care resources. But in

order for data derived from electronic

health records to be used to characterize

the health of population, three

conditions must be met. These three

conditions relate to the known

numerators and denominators needed to

produce population-based health

statistics.

1. First, electronic health records must

produce numerator data about health

events, conditions, diseases,

functional health status, well-being,

or influences on population health.

2. Second, denominator data must exist

that describes the population in terms

of size, geographic location, and basic

demographic characteristics for the

numerator data produced by electronic

health records. Denominators are

typically defined at some geographic

level in health statistics.

3. Third and finally, a match must exist

between the numerator and the

denominator; in other words, the

numerator must be drawn from the

population denominator.

Data derived from electronic health

records can only be useful for

population health monitoring and

research if they are associated with a

geographically based denominator with

known characteristics, and especially

demographic characteristics.

Numerator and denominator issues

In order to be most useful for

generating valid population-based health

statistics, national strategies for

electronic health records should confront

the following numerator and

denominator issues:

Penetration of electronic health

records: Electronic health records must

either penetrate an entire geographically

based population, or a truly random

subset of that population with known

characteristics, or a non-random subset

of that population with known

characteristics that can be linked to a

population denominator with known

characteristics.

Data quality and completeness:

Numerator and denominator data

produced by electronic health records

must meet the same professional

standards of validity, reliability, and

completeness as currently met by

population health monitoring data sets

such as births, cancer incidence, and

population-based surveys.

Consent: Patient control of what

data are entered into electronic health

records and used for population health

monitoring and research may adversely

affect the quality and completeness of

numerator and denominator data.

Unique patient identification: Some

form of unique identification of

individual patients is necessary if

electronic health records are to provide

data for population health monitoring

and research. Unique patient

identification could occur through

numbering systems, or through

algorithmic probabilistic or deterministic

linkage of a specified set of identifier

variables, or through a master patient

index. To the extent that health statistics

extend beyond health events, diseases,

and conditions treated through the

healthcare system, unique identification

of patients rather than unique

identification of each person in the

population may limit the development of

population-based health statistics.

Overarching issues

Even if national strategies for

electronic health records successfully

address issues relating to generating

numerators and denominators, the

penetration of electronic health records,

data quality and completeness, consent,

and unique patient identification, other

overarching issues remain that may limit

the utility of electronic health records

for population health monitoring and

research.

Population health and healthcare:

Healthcare is only one of many

influences on population health. Given

the multitude and variety of influences

on population health, data collected

through electronic health records in

healthcare settings may not adequately

represent the full range of population

health and the influences on it. In

addition to electronic health records,

population health monitoring and

research may continue to require

collection of data from other sources

and through other mechanisms.

Structured data in electronic health

records: Electronic health records will

only be useful for population health

monitoring and research if they contain

or can yield structured data that can be

coded, classified, and statistically

analyzed.

Analysis: In order to cull needed

data in the needed formats from the

huge amount of data in electronic health

records, public health practitioners will

need new technologies and

methodologies.

Cultural changes: Cultural changes

will need to occur among public health

practitioners, clinicians, and the public if

electronic health records are to be used

for population health monitoring and

research.

Incentives for the adoption and use

of electronic health records: Issues of

providing and aligning incentives to

clinicians for adopting and using

electronic health records for the

secondary uses of population health

monitoring and research will be even

more daunting than for the primary uses

of clinical care.

ix
Transformative limits of electronic

health records

No single answer can be provided

to questions about the potential

contribution of national strategies for

electronic health records for population

health monitoring and research. Answers

will depend upon at least four questions:

1. Does the particular data collection

stream include reportable diseases

and registries, administrative health

data, or population-based surveys?

2. Are electronic health records

envisioned as supplementing current

data collection streams, or replacing

current data collection streams, or

as a data source for linkage with

current data collection streams?

3. Do electronic health records meet

current population health

monitoring criteria for data quality

and completeness?

4. Will population-based

implementation of electronic health

records lead to new population

health monitoring criteria for data

quality and completeness, different

from those currently employed?

Success factors

A definitive analysis identifying the

factors leading to the successful use of

electronic health records for population

health monitoring and research is not

possible given the current status of

national strategies for electronic health

records. However, this report provides

cautious speculation—intended to

provoke discussion and debate—about

factors maximizing the potential use of

electronic health records for population

health monitoring and research.

Enabling factors increase the

likelihood of the successful use of

electronic health records for population

health monitoring and research.

Health system enabling factors

include:

+ greater funding of the healthcare

system by the government;

+ a low percentage of individuals

without health insurance; a higher

ratio of general practitioners to

specialists; and

+ greater central coordination of the

health system.

Health information system enabling

factors include:

+ a closer relationship between the

provision of health care information

for clinical and administrative

purposes from data sources and the

conduct of population health

monitoring;

+ reduced fragmentation among

population health monitoring data

collections;

+ clinician incentives for adopting and

using electronic health records; and

+ cultural changes among clinicians

supporting the use of electronic

health records for population health

monitoring.

Threshold factors are factors

without which the successful use of

electronic health records for population

health monitoring and research may fail.

A business threshold factor is the

explicit inclusion of population health

monitoring and research as integral

components of the national strategy for

electronic health records.

System threshold factors include

mandates within the national strategy for

electronic health records for:

+ integrated electronic provision of

data and integrated data flows from

diverse healthcare sources for

clinical, reimbursement,

administrative, and population health

monitoring purposes;

+ use of structured data for electronic

health records;

+ the development of data standards

jointly useful for clinical,

reimbursement, administrative, and

population health monitoring

purposes;

+ clear definitions of the data required

to be collected for population health

monitoring and clear rules for the

derivation of those data from

electronic health records; and

+ some form of unique patient

identification and the use of unique

patient identification, encrypted or

unencrypted, for all electronic

provision of data.

Tipping factors maximize the

potential for the successful use of

electronic health records for population

health monitoring and research. Tipping

factors include:

+ a form of reimbursement for

physicians that could mandate the

nature, contents, and use of

electronic health records, such as

salary-based reimbursement or other

systems where physicians are

required to follow established

uniform recording protocols;

+ mandated implementation of

implementation of electronic health

records with mandated standards;

and

+ confluence of strong governmental

leadership of the healthcare sector

and greater governmental

coordination or control of the

healthcare sector, which may be

promoted through the existence of a

predominant payer for healthcare or

a predominantly single payer

system.

Conclusions (see Chapter 7)

In 2006, it is still too early to

ascertain the actual potential of national

strategies for electronic health records

for population health monitoring and

research. With the exception of England,

the development of national strategies

remains in germinal stages. Even in

England, implementation is in an early

stage. An evidence base does not exist

from which to judge how successfully

national strategies for electronic health

records can support population health

monitoring and research. As indicated

by the National Health Service

Information Authority, ‘‘data needed to

support secondary information

purposes. . . should be derivable from

data that is collected as part of the

operational care process. . . However,

critical aspects of this hypothesis remain

operationally untested.’’

5

5

NHS Information Authority, National Dataset

Development Programme (2002 Sep). Emerging

dataset issues: enabling the derivation of

‘‘business’’ information from electronic records.

Draft 0.5 London (UK): NHS Information

Authority: 3–4.

x
Table S.1. National strategies for electronic health records, by country: 2005

Australia Canada England 

Locus of national HealthConnect Canada Health Infoway National Health Service (NHS) 

responsibilities (Department of Health and Ageing); Connecting for Health 

National E-Health Transition Authority

Stages* Design Design, with broad national target dates Implementation, with specific national 

for implementation target dates

Current status – Initial national strategy published in

2004

– Local pilots implemented and evaluated– Locus of responsibility for national

strategy evolving

– Key elements of supporting national

health information infrastructure being

specified, including: interoperabilityframework, health record design,

clinical terminologies, clinicalinformation, healthcare identifier, and

E-health consent

– Initial national strategy published in – National strategy iteratively developed 

2003, with updated strategy to be since 1998published in 2006 – Local pilots implemented and evaluate

– Strategic investments in key elements – Implementation of electronic patient

of supporting national health information records occurring regionallyinfrastructure, including: registries – Implementation of electronic health(client, provider, and location), record occurring nationallyinteroperable electronic health recordsystems, infostructure, innovation andadoption, and public health surveillance

Patient identification Under discussion and development, with Under discussion and development, with National Health Service number 

possibility of adaptation of elements of emphasis on development of jurisdictional

national health insurance number unique identifiers and inter-jurisdictional

identifier

Patient confidentiality and – Initial conceptualization of opt-in Support for ‘‘lockbox,’’ enabling patients – ‘‘Sealed envelope,’’ enabling patients t

consent consent for participation in electronic to ‘‘mask’’ information at their request designate information not to be shared 

health records beyond their immediate clinician

– Consent options currently under – Pseudo-anonymized and anonymized

reconsideration and in development data can be shared for population

health monitoring

Population health monitoring – Initial conceptualization of National Data Investment in communicable disease Secondary Uses Service implemented, 

Store of electronic health records, surveillance as part of national strategy with emphasis on uses of electronic 

enabling uses of largely de-identified health records and other data streams fo

data for population health monitoring population health monitoring

– Does not appear as current priority

secondary use

* Stages not intended to represent a continuum.

xi
Highlights

Assessing the potential of National Strategies for Electronic Health Records for

Population Health Monitoring and Research

January 2006

Why NCHS commissioned this

study

Healthcare costs continue to

increase. The media, the public, and

health professionals now recognize that

unnecessary morbidity, mortality, and

healthcare costs resulting from adverse

events and medical errors are serious

problems. The U.S. and other developed

nations are adopting health information

technology as a tool for rationalizing

complicated healthcare systems,

improving the quality of patient care,

moderating healthcare costs, and

reducing the incidence of adverse

events. Electronic health records

constitute the core of health information

technology. The U.S., Australia, Canada,

England, and New Zealand are all

developing national strategies for

electronic health records, accompanied

by substantial investments of public and

private sector funds in implementing

those strategies.

The Centers for Disease Control

and Prevention’s National Center Health

Statistics commissioned this report to

assess the potential contribution of

national strategies for electronic health

records for population health monitoring

and research. The report focuses on

those types of population health

monitoring that generate health statistics

for measuring the population’s health,

rather than those types of population

health monitoring used to detect health

events and diseases for the purposes of

immediate public health interventions.

What this study did

This study:

1. Reviewed national strategies for

electronic health records in Australia,

Canada, England, and New Zealand,

and especially the implications of

those strategies for population health

monitoring by producing health

statistics and by encouraging research

employing health statistics. The

review relied on reports,

presentations, Web pages, and

articles, which were publicly

available before January 2006. See

Chapters 2 and 4.

2. Identified the potential contribution

of national strategies for electronic

health records for population health

monitoring and research and barriers

to achieving that potential. The

identification of the potential

contribution and barriers relied on

interviews with 96 experts in U.S.,

Australia, Canada, England, and New

Zealand. See Chapters 2, 5, and 6.

3. Delineated fundamental issues that

must be confronted to maximize the

contribution of national strategies for

electronic health records to

population health monitoring and

research, and especially to health

statistics. See Chapter 7.

This study did not explore issues

relating to the potential of national

strategies for electronic health records

for health event and disease detection

for the purposes of immediate public

health interventions, such as case-based

surveillance, syndromic surveillance,

and bioterrorism surveillance.

What this study found

National strategies for electronic

health records reflect the political,

healthcare, and market systems of

individual countries. National strategies

for electronic health records also reflect

both technical decisions and political

judgments, which may change over

time. National strategies are developing

and evolving, and passing through

stages of conceptualization, design, pilot

testing, and implementation. Only

England has moved to implementation.

Population health monitoring and

research, and especially health statistics,

are explicitly secondary to the primary

uses of clinical care and management in

all national strategies for electronic

health records. Only England has

conceptualized, designed, and is now

implementing the use of electronic

health records for population health

monitoring and research. Canada’s

strategy does include communicable

disease surveillance, but not broader

population health monitoring for

developing health statistics.

This study identifies definitional

issues, numerator and denominator

issues, and overarching issues that must

be evaluated in assessing the potential

of national strategies for electronic

health records for population health

monitoring and research. It also

delineates success factors that increase

the potential for those national strategies

to contribute to population health

monitoring and research, including

threshold, enabling, and tipping factors.

Finally, this study offers a sobering

assessment of the barriers that must be

overcome if national strategies for

electronic health records can contribute

to population health monitoring and

research, and especially to health

statistics.

xii
Objectives

This report assesses the potential of

national strategies for electronic health

records for population health monitoring and

research.

Methods

This study: 1. Reviewed national

strategies for electronic health records in

Australia, Canada, England, and New

Zealand, through written materials available

before January 2006. 2. Identified the

potential of national strategies for electronic

health records for population health

monitoring and research through interviews

with 96 experts in the U.S., Australia,

Canada, England, and New Zealand.

3. Delineated fundamental issues that must

be confronted to maximize the contribution

of national strategies for electronic health

records to population health monitoring and

research.

Results

National strategies for electronic health

records reflect the political, healthcare, and

market systems of individual countries.

National strategies also reflect technical

decisions and political judgments. National

strategies are evolving, and passing through

stages of conceptualization, design, pilot

testing, and implementation. Only England

has moved to implementation.

Population health monitoring and

research are secondary to the primary uses

of clinical care and management in all

national strategies for electronic health

records. Only England has conceptualized,

designed, and is implementing the use of

electronic health records for population

health monitoring and research. Canada’s

strategy includes communicable disease

surveillance, but not broader population

health monitoring for developing health

statistics.

This study identifies definitional,

numerator, denominator, and overarching

issues that must be evaluated in assessing

the potential of national strategies for

electronic health records for population

health monitoring and research. It delineates

success factors that increase the potential

for those national strategies to contribute to

population health monitoring and research.

Finally, this study assesses barriers that

must be overcome if national strategies for

electronic health records can contribute to

population health monitoring and research,

and especially to health statistics.

Keywords: Electronic health records

c population health c health statistics

Assessing the Potential of

National Strategies for Electronic

Health Records for Population

Health Monitoring and Research

by Daniel J. Friedman, Ph.D., Population and Public Health

Information Services

Chapter 1.

Introduction

I

nitiated in October 2004, this project

builds upon two previous reports

that portray a new landscape for

health statistics: Shaping a Health

Statistics Vision for the 21st Century:

The Final Report, a joint report

developed by the National Committee

on Vital and Health Statistics, the

Centers for Disease Control and

Prevention’s National Center for Health

Statistics, and the U.S. Department of

Health and Human Services’ Data

Council (Friedman, Hunter, Parrish

2002); and Information for Health: A

Strategy for Building the National

Health Information Infrastructure, a

report released by the National

Committee on Vital and Health Statistics

(2001). The two reports describe a more

rational future for population-based

health data collection and analysis in the

U.S., distinguished by:

+ increased integration of presently

distinct data collections, especially

those in which healthcare providers

now respond to different but

overlapping data collection mandates

from a single state health agency;

+ decreased burden on healthcare

providers responding to data

collections mandates from state and

federal health agencies;

+ multiple uses for collected data and

‘‘repurposing’’ of data integrated at

the point of data collection; and

+ greater utility and utilization of

collected data for healthcare

providers, health agencies, and other

analysts and users.

Both reports describe general

strategies for achieving that more

rational future, revolving around

conceptual and practical integration of

health statistics into the developing U.S.

national health information infrastructure

(NHII). In related articles, Detmer

(2003), Lumpkin and Deering (2005),

and Lumpkin and Richards (2002) also

conceptualized the potential relationship

between health statistics and the national

health information infrastructure.

Purpose

The purpose of this report is to

assess the potential of national strategies

for electronic health records for

population health monitoring and

research. The emphasis in this report is

upon those types of population health

monitoring typically used to develop

health statistics, such as populationbased registries, population-based

surveys, and administrative health data,

rather than those types of population

Author may be contacted at danieljfriedman@verizon.net or danieljfriedman@hotmail.com.

Disclaimer: The findings and conclusions in this report are those of the author and do not necessarily

represent the views of the Centers for Disease Control and Prevention.

Page 1
Page 2 [ Series 2, No. 143

health monitoring used to detect health

events and diseases for the purposes of

immediate public health interventions.

More specifically, this report has a

fourfold purpose: first, to describe the

current status of national strategies for

electronic health records and their

supporting national health information

infrastructures in Australia, Canada,

England, and New Zealand, especially

as those national strategies relate to

population health monitoring to produce

health statistics and research employing

health statistics; second, to summarize

themes about the potential contributions,

and barriers to those contributions, of

national strategies for electronic health

records for population health monitoring

and research and barriers that emerged

from key informant interviews with

experts in the same four countries; third

to summarize themes emerging from

key informant interviews with U.S.

experts; and fourth, to delineate major

fundamental issues in the relationship

between national strategies for electronic

health records and population health and

monitoring. This study did not explore

issues relating to the potential of national

strategies for electronic health records for

health event and disease detection for the

purposes of immediate public health

interventions, such as case-based

surveillance, syndromic surveillance, and

bioterrorism surveillance.

Central Concepts

Central concepts utilized

throughout this report are defined and

discussed here. These include

population health, population health

monitoring, population health research,

health statistics, electronic patient

records, shared electronic health

records, and national health

information infrastructure. Especially

important for understanding this

report’s discussions of developments

in Australia, Canada, England, and

New Zealand are the distinctions

between electronic patient records and

shared electronic health records

described below. Additional definitions

of terms and acronyms are provided in

the Glossary.

Population health

Kindig and Stoddart define

population health as ‘‘the health

outcomes of a group of individuals,

including the distribution of such

outcomes within the group’’ (Kindig and

Stoddart 2003, p. 381). Population

health encompasses the level and

distribution of disease, functional status,

and well-being within a group (Parrish,

Friedman, and Hunter 2005, 18). See

Figure 1.1.

Population health monitoring

Population health monitoring can be

defined as the collection and analysis of

data to detect and describe changes in

the population’s health and influences

on the population’s health. See

Figure 1.1. Population health monitoring

can occur through either (a) intermittent

but regularly scheduled primary

collection of data (that is, data

specifically collected for the purpose of

population health monitoring) and the

analysis of those data, or (b) ongoing

primary collection data and their

analysis, or (c) intermittent or ongoing

secondary collection of data (that is,

data not specifically collected for the

purpose of population health

monitoring) and their analysis. Primary

collection of data for population health

monitoring typically occurs through

registries and mandated reports of

diseases and population-based surveys

(Koo, Wingo, and Rothwell 2005;

Madans and Cohen 2005). Secondary

collection of data for population health

monitoring typically occurs from

administrative health data and nonhealth

data sources (Bailey et al. 2005; Iezzoni,

Schwartz, and Ash 2005).

Population health research

Population health research is

research on population health or those

factors that affect population health.

Numerator

A numerator is ‘‘the upper portion

of a fraction, used to calculate a rate or

a ratio’’ (Last et al., 126). Numerators

represent the aspect of the population’s

health being measured, such as a health

event, disease, condition, functional

status, or well-being.

Denominator

A denominator is ‘‘the lower

portion of a fraction used to calculate a

rate or ratio. The population. . . at risk

in the calculation of a rate or ratio’’

(Last et al., 49). Denominators represent

the population in which the particular

aspect of population health is being

measured.

Health statistics

Health statistics are defined as

‘‘numerical data that characterize the

health of a population and the influences

that affect its health’’ (Parrish,

Friedman, and Hunter 2005, 3). Health

statistics are generated through

population health monitoring, and are

employed for conducting population

health research. The types of population

health monitoring that typically generate

health statistics are reportable diseases

and registries, administrative health data,

and population-based surveys, as well as

nonhealth data sources (Bailey et al.

2005; Iezzoni, Shwartz, and Ash 2005,

139–160; Koo, Wingo, and Rothwell

2005, 81–118; Madans and Cohen 2005,

119–138). This report focuses largely on

those types of population health

monitoring that generate health statistics.

Population-based health statistics

require both a known numerator and a

known denominator. In order to

characterize the health of a population

through health statistics, three

necessary conditions relating to

numerators and denominators must be

met. First, numerator data must exist

about a health event, condition,

disease, functional health status,

well-being, or an influence on

population health. Second,

denominator data must exist that

describe the population in terms of its

size, its geographic location, and its

basic demographic characteristics.

Third and finally, a match must exist

between the numerator and the

denominator; in other words, the

numerator must be drawn from the

population denominator.
Series 2, No. 143 [ Page 3

Figure 1.1. Influences on the population’s health

SOURCE: Parrish RG, Friedman DJ, Hunter EL (2005). Defining health statistics and their scope. In: Friedman DJ, Hunter EL, Parrish RG (editors), Health Statistics:

Shaping Policy and Practice to Improve the Population’s Health. New York: Oxford University Press; 18.

Electronic patient records (EPRs)

This report adopts the definition of

electronic patient records used by the

United Kingdom’s National Health

Service in its Information for Health:

the ‘‘’Electronic Patient Record’

describes the record of the periodic care

provided mainly by one institution’’

(NHS Executive 1998 Sep, 25). In other

words, as used here in contrast to the

shared electronic health record described

immediately below, the electronic

patient record is the desktop record

utilized by the clinician in providing,

managing, and recording care for

individual patients. Also in contrast to

the shared electronic health record

(defined below), the electronic patient

records can be specific to an individual

healthcare provider or an individual

healthcare provider site, or it can be

shared or interoperable across providers

and provider sites. As described by the

Institute of Medicine, by the National

Health Service, and by numerous other

sources, the electronic patient record can

include a wide range of functionalities

in support of the direct provision of care

(Brennan 2005, 67–70; Institute of

Medicine 2003, 7–12).

Electronic health records

(EHRs)

For the purposes of this report,

electronic health records are defined as

an electronic repository of patientcentric data that are identifiable,

longitudinal and preferably life-long,

cross-provider, cross-provider site, and

cross the spectrum of healthcare,

including primary care, acute hospital

care, long-term care, and home care.

The definition of electronic health

record used in this report assumes that

they are interoperable and capable of

being shared across healthcare providers

and provider sites.1 This report deals

principally with national strategies for

electronic health records and supporting

national health infrastructures (defined

below).

This report seeks to synthesize the

perspectives of almost one hundred

experts in five countries. As the report

describes, the definition of electronic

health records differs across these

countries. In extracting common themes

1

‘‘In healthcare, interoperability is the ability of

different information technology systems and

software applications to communicate, to exchange

data accurately, effectively, and consistently, and

to use the information that has been exchanged’’

(National Alliance for Health Information

Technology [hp]).
Page 4 [ Series 2, No. 143

across countries from interviews with

those informants and in identifying

fundamental factors across countries

enabling the use of electronic health

records for population health monitoring

and research, this report will use a

definition of electronic health records

used throughout this report is similar to

the definition posited by the

International Standards Organization

Technical Committee 215 in its ‘‘Health

Informatics—Electronic health

record—definition, scope, and context’’,

in which it the electronic health record

for integrated care (ICEHR) is described

as ‘‘a repository of information

regarding the health status of a subject

of care in computer processable form,

stored and transmitted securely, and

accessible by multiple authorised users.

It has a standardized or commonly

agreed logical information model which

is independent of EHR systems. Its

primary purpose is the support of

continuing, efficient and quality

integrated healthcare and it contains

information which is retrospective,

concurrent, and prospective’’ (ISO TC

215/WG 1 2004 Jul 29; Schloeffel

2004). The definition is also similar to

that posited by the United Kingdom’s

National Health Service in Information for

Health: the EHR ‘‘is used to describe the

concept of a longitudinal record of

patient’s health and healthcare—from

cradle to grave. It combines both the

information about patient contacts with

primary healthcare as well as subsets of

information associated with the outcomes

of periodic care held in the EPRs’’ (NHS

Executive 1998 Sep, 25; see also Brennan

2005, 81–3).

The definition of electronic health

records employed in this report does not

necessarily include the actual desktop

electronic record used by clinicians for

direct care functions such as care

management, clinical decision support,

and operations management and

communication (DeVault, Fischetti,

Spears 2005 Nov, 8). As such, the

definition of electronic health records

used in this report differs from some

other definitions of electronic health

records, such as those of the Institute of

Medicine in its ‘‘Key capabilities of an

electronic health record system’’, by the

Office of the National Coordinator for

Health Information Technology in its

‘‘The Decade of Health Information

Technology: Delivering Consumercentric and Information-rich

Healthcare’’, and by Amatayakul in her

Electronic Health Records: A Practical

Guide for Professionals and

Organizations (Amatayakul 2004, 1–4;

Institute of Medicine 2003, 7–12;

Thompson and Brailer 2004 Jul 21, 37).

It is essential to realize that ‘‘there

is as yet no one internationally accepted

definition of the electronic health

record’’ or the electronic patient record

(Standards Australia 2005, v, 4). Many

different terms describing systematic

electronic record keeping for patient

information have been used at different

times and in different countries by

different authors and different

organizations (Brailer 2003 Oct, 7;

DeVault, Fischetti, Spears 2005, 4;

Schloeffel 2004 Sep 1). Some

definitions are broad and general (for

example, see: Canadian Institute for

Health Information [hp] Partnership for

Health Information Standards, Glossary

of Terms; CEN/TC 251; Wyatt and Liu

2002). Other definitions include detailed

functionalities (for example, see:

DeVault, Fischetti, Spears 2005). When

comparing definitions of electronic

patient records and electronic health

records, it is essential to focus on the

attributes described in the particular

definitions rather than assuming that

commonalities exist between definitions

of electronic patient records or

electronic health records from different

sources (National Committee on Vital

and Health Statistics 2005 Sep 9).

National health information

infrastructure (NHII)

In Information for Health: A

Strategy for Building the National

Health Information Infrastructure, the

National Committee on Vital and Health

Statistics (NCVHS) described ‘‘the heart

of the vision for the NHII . . . [as]

sharing information and knowledge

appropriately so it is available to people

when they need it to make the best

possible health decisions’’ (National

Committee on Vital and Health Statistics

2001, 1). According to the NCVHS,

‘‘the NHII includes not just technologies

but, more importantly, values, practices,

relationships, laws, standards, systems,

and applications that support all facets

of individual health, healthcare, and

public health. It encompasses tools such

as clinical practice guidelines,

educational resources for the public and

health professionals, geographic

information systems, health statistics at

all levels of government, and many

forms of communication among users’’

(National Committee on Vital and

Health Statistics 2001, 1). As initially

conceptualized by the NCVHS, the

national health information infrastructure

includes three main dimensions: the

healthcare provider, population health,

and personal health dimensions

(National Committee on Vital and

Health Statistics 2001, 14–16). These

dimensions can also be seen as different

‘‘views.’’ The three dimensions can be

extended and re-conceptualized to

include others dimensions or views,

such as research, public health,

healthcare delivery, and personal health

management (Detmer 2003).

This report uses a narrower,

component-based definition of national

health information infrastructures,

focusing on electronic health records,

often built upon electronic patient

records, and shared through interoperability, electronic connectivity,

common standards for coding and

classification, nomenclature, and

messaging. Paraphrasing the NCVHS, a

national health information

infrastructure, as defined for the

purposes of this report, refers to the

technologies, relationships, laws,

standards, systems, and applications that

support the development,

implementation, and dissemination of

electronic health records.
Series 2, No. 143 [ Page 5

Chapter 2. Methods

The potential of national strategies

for electronic health records for

population health monitoring and

research has been explored through two

mechanisms: environmental scans of

related developments in Australia,

Canada, England, New Zealand, and the

U.S.; and interviews with experts in

each of these countries. Australia,

Canada, England, and New Zealand

were chosen as a convenience sample

for several reasons: the four countries

represent a range of national strategies

for electronic health records; their

national strategies are at different stages

of implementation; the healthcare

systems of the four countries differ from

that of the U. S., yet some comparable

aspects exist; and the environmental

scans and interviews for this study could

be conducted in English.

Environmental Scan of

Related Developments

The environmental scan

encompassed review of documents and

other materials relevant to national

strategies for electronic health records

that were publicly available before

January 2006, including World Wide

Web sites, presentations, reports, and

articles in peer-reviewed and trade

journals. The review used four

strategies:

1. Structured search of the World Wide

Web to identify relevant materials.

Fixed search criteria were employed

to search for Web sites, government

reports, presentations, and articles

relevant to each country. The same

fixed search criteria and algorithms

were used for each country of the

four countries. The structured

search criteria and algorithms are

described in Appendix 1.

2. Directed search of the World Wide

Web. Additional follow-up Web

searches were conducted for each

country. Key Web sites were

identified for each country,

including national government,

provincial and state government,

and quasi-governmental

organization sites, and then

thoroughly searched.

3. Structured literature reviews. The

same search algorithms as used in

the Web structured search were also

used to identify published scientific

literature through PubMed.

4. Directed literature reviews. Tables

of contents for selected peerreviewed and trade journals were

reviewed since 2000 (or since the

first year of journal publication, if

the first year of publication was

later than 2000). See Appendix 2

for a list of these journals.

Additional follow-up searches were

also conducted to obtain individual

articles in other journals.

Review of publicly available

reports, presentations, and articles

pertinent to national strategies for

electronic health records may provide

incomplete or only partially accurate

information, especially relating to

secondary uses of electronic health

records such as population health

monitoring and research. National

strategies for electronic health records

vary widely in their development and

their articulation. Information about

some issues—and especially issues

relating to population health monitoring

and research—may be sparse or absent.

National strategies for electronic health

records are relatively recent. Some

national strategies for electronic health

records are germinal, and all national

strategies are still evolving. The author

has attempted to explore thoroughly

publicly available materials.

Expert Interviews

Key informant interviews were

conducted with experts knowledgeable

about national strategies for electronic

health records or population health

monitoring and research in each country.

The basic purpose of the interviews was

twofold: first, to identify the current

status of the relationship between each

nation’s strategies for electronic health

records and population health

monitoring and research; and second, to

identify the potential future contribution

of each nation’s national strategies for

electronic health records to population

health monitoring and research.

All interviews were conducted

through scheduled telephone

conversations, which ranged from 30–90

minutes. Each interview was preceded

by at least one introductory e-mail letter

introducing the purpose of the project

and the nature of the interview, and

sometimes also preceded by an

introductory telephone call. Following

each interview, follow-up e-mail

exchanges typically occurred in order to

clarify points made during the interview

and to obtain additional information.

Interviews were informal and not

for attribution to an identified expert.

The contents of each interview were

tailored to the specific professional roles

of each respondent. Interview guides

were employed for all interviews.

Appendix 3 provides an example of a

typical interview guide.

Telephone interviews were

conducted with sixteen experts in

Australia, eighteen in Canada, twenty in

England, eleven in New Zealand, and

thirty-one in the United States, for a

total of ninety-six interviews in the five

countries. Table 2.1 summarizes the

number of completed interviews and the

number of interview requests for each

country. Interviews were conducted with

experts responsible for population health

monitoring at national and sub-national

levels; experts responsible for national

strategies for electronic health records

and implementation of those strategies

at national and sub-national levels;

university-based population health

researchers; and other experts, including

primary care physicians with

management responsibilities and

particular interests in electronic health

records. Table 2.2 summarizes the

numbers and types of respondents by

country. Appendices 4A–4E list, by

country, all experts interviewed, their

positions, and their affiliations.
Page 6 [ Series 2, No. 143

Table 2.1. Requested and completed key informant interviews, by country

Key informant interviews Australia Canada England New Zealand United States Total

Interview requests ......................... 19 18 28 18 35 118

Interview completions....................... 16 18 20 11 31 96

Table 2.2. Types of key informants, by country

Type of respondent Australia Canada England New Zealand United States Total

National

Population health monitoring ..................

Shared electronic health records ................

8

2

6

2

2

2

3

2

4

8

23

16

Subnational

Population health monitoring ..................

Shared electronic health records ................

Clinical................................

University ..............................

Other.................................

4

1

1

3

3

4

4

3

9

1

2

3

2

12

2

3

13

19

2

19

4

Total ................................. 16 18 20 11 31 96
Chapter 3. Factors

Impacting on National

Strategies for

Electronic Health

Records

The development of national

strategies for electronic health

records and their relationships to

population health monitoring and

research must be viewed within the

larger context of national health

systems, including national population

health status; health expenditures; and

health system context, structure,

processes, and performance. This

chapter provides context for later

chapters of this report discussing the

potential contribution of national

strategies for electronic health records to

population health monitoring and

research, through a quick overview of

population health status, health

expenditures, health systems, and public

opinion relating to the health system and

the use of personal health information in

Australia, Canada, New Zealand, the

United Kingdom (U.K.), and the U.S.

Population Health Status

The development of national

strategies for electronic health records is

affected by available resources and

health system priorities, which are, in

turn, affected by both population health

status and health expenditures. Among

the five countries investigated,

population size varies greatly, from less

than 4 million in New Zealand to almost

300 million in the U.S. See Table 3.1.

Population health status, as measured by

life expectancy at birth and infant

mortality, is relatively similar in the five

countries. Australia and Canada have the

highest life expectancy at birth and

Australia has the lowest infant mortality

rates. The U.S. ranks last among the

five nations in life expectancy at birth

and infant mortality rate.

Health Expenditures2

Substantial differences exist

between the U.S. and the investigated

nations in health expenditures. See

Table 3.2. U.S. expenditures on health as

a percentage of gross domestic product

in 2002 (14.6%) ranked highest, almost

twice as high as the U.K. (7.7%), and

substantially higher than Australia

(9.5%), Canada (9.6%), and New

Zealand (8.5%). Similarly, general

government expenditures on health as a

percentage of total government

expenditures were almost fifty percent

higher in the U.S. (23.1%) than in any

of the four countries (range from 15.5%

to 171%). However, general government

expenditures as a percentage of total

expenditures on health in the U.S.

(44.9%) were substantially lower than in

the U.K. (83.4%), New Zealand

(77.9%), Canada (69.9%), and Australia

(67.9%). Conversely, private

expenditures account for a much higher

share of total expenditures on health in

the U.S. (55.1%) than in the U.K.

(16.6%), New Zealand (22.1%),

Australia (32.1%), and Canada (30.1%).

Health Systems

Australia, Canada, New Zealand,

the U.K., and the U.S. have contrasting

health system contexts, structures, and

process and performance. Selected

examples of these contrasts especially

relevant to NHIIs and their relationships

to population health monitoring and

research are presented here, with

additional details provided in Tables 3.3,

3.4, and 3.5.

Universal health insurance is firmly

established in four of the nations, with

the U.S. constituting the sole exception.

Similarly, healthcare is perceived as a

public good and as a right in the same

four countries. See Table 3.3. Healthcare

2

For definitions, original data sources, and

methodology for gross domestic product, general

government expenditures on health, total

government expenditures, private expenditures on

health, and total expenditures on health, see:

World Health Organization (2005). World Health

Report 2005. Geneva: World Health Organization.

Statistical Annex Explanatory Notes, pp. 159–164.

Available from: http://www.who.int/whr/2005/

10_annexes_notes_en.pdf [cited 2006 Jan3].

Series 2, No. 143 [ Page 7

in Australia, Canada, New Zealand and

the U.K. is financed primarily through

taxes, as opposed to the U.S.’s mixed

private/public financing with employerbased insurance playing a major role.

Greater centralized control of healthcare

also exists in these four countries, with

some control devolving to Australian

states, Canadian provinces, and New

Zealand District Health Boards.

Hospitals in these four countries are

primarily public, unlike in the U.S. In

each of these four countries, the ratio of

general practitioners to specialists is

approximately even (ranging from 51:49

in Canada to 60:40 in the U.K.), with

the U.S. again standing as an exception

with a general practitioner to specialist

ratio of 30:70. See Table 3.4. Consistent

with the greater centralized control of

healthcare in Australia, Canada, New

Zealand, and the U.K., these nations

also allocate healthcare resources at

macro-levels in the public sector. See

Table 3.5. In Australia, state-level

allocation of hospital resources occurs;

in Canada, global budgets and price

controls are imposed at the provincial

level, with authority delegated down to

Regional Health Authorities within

provinces; in New Zealand, populationbased global budgets are established for

District Health Boards; and in the U.K.,

and in the U.K., population-based global

budgets are set centrally by the NHS,

and allocated through regional and

district health authorities to local

Primary Care Trusts and NHS Hospital

Trusts.

Public Opinion

The Commonwealth Fund’s

International Health Policy Survey

provides informative data relating to

public opinion about health systems in

Australia, Canada, New Zealand, the

U.K. and the U.S. (Kaiser Family

Foundation 2004; Schoen and Osborn

2004; Schoen, Osborn, and Huyna et al.,

2004). Of the surveyed countries, U.S.

respondents were most likely to say that

their national healthcare system needs to

be rebuilt completely (33%), more than

twice the percentage in Canada and the

U.K. (See Table 3.6.) U.S. respondents

were least likely to report having a

regular doctor or place of care, also
Page 8 [ Series 2, No. 143

least likely having a regular doctor or

place of care for more than five years.

Reflecting the health expenditures data

reported earlier, 26% of U.S.

respondents indicated out-of-pocket

medical expenses of more than U.S.

$1,000 in the past year, compared to a

range from 4% (U.K.) to 14%

(Australia) for the other investigated

countries.

The Commonwealth Fund survey

also provides data relating to medical

records and health information. When

asked if they wanted information on

physician quality of care when seeing a

new doctor, 56% of U.S. respondents

said ‘‘yes,’’ a much higher percentage

than in the other four countries (range

from 40% in Canada to 18% in the

U.K.). A higher percentage of U.S.

respondents indicated that they currently

have access to their own medical

records (51%), compared to the other

four countries (range from 45% in New

Zealand to 28% in the U.K.). A higher

percentage of U.S. respondents also said

that test results or records were not

available at the time of a medical

appointment and that a doctor ordered

tests that had already been done. Finally,

New Zealand and U.S. respondents were

more likely than respondents in the

other three countries to say that they

currently can e-mail their doctor.
Series 2, No. 143 [ Page 9

Table 3.1. Population health status, by country1

Country

Total population

(000)2

Life expectancy

at birth2 (years)

Infant mortality2,3

(per 1,000 live births)

Australia............................... 19,731 81 4.8

Canada ............................... 31,510 80 4

5.4

New Zealand ............................ 3,875 79 5

5.6

United Kingdom .......................... 59,251 79 5.3

United States............................ 294,043 78 4

7.0

1Data source: World Health Organization (2005). World Health Report 2005. Geneva: World Health Organization, Statistical Annex Table 1, pages 175–180. Available from: http://www.who.int/whr/2005/

annexes-en.pdf [cited 2005 Sep 12].

2Data year 2003.

3Organisation for Economic Cooperation and Development (2005) [hp]. OECD Health Data 2005. Frequently Requested Data. Geneva: Organisation for Economic Cooperation and Development.

Available from: http://www.oecd.org/document/16/0,2340,en_2825_495642_2085200_1_1_1_1,00.html [cited 2005 Sep 12].

4Data year 2002.

5Data year 2001.

Table 3.2. Health expenditures, by country

Country

Total expenditures

on health as

percentage

of GDP1,2

General government

expenditures on

health as percentage

of total government

expenditures1,2

Private

expenditures as

percentage of

total expenditures

on health1,2

General government

expenditures on health

as percentage of

total expenditures

on health1,2

Australia ....................... 9.5 17.1 32.1 67.9

Canada ........................ 9.6 15.9 30.1 69.9

New Zealand..................... 8.5 15.5 22.1 77.9

United Kingdom ................... 7.7 15.8 16.6 83.4

United States .................... 14.6 23.1 55.1 44.9

1Data source: World Health Organization (2005). World Health Report 2005 Geneva: World Health Organization. Statistical Annex Table 5, pages 193–199. Available from: http://www.who.int/whr/2005/

annexes-en.pdf [cited 2005 Sep 12].

2Data year 2002.
ntext, by country1

Canada New Zealand United Kingdom United States

e dating

48

d in 1984

mix

– Universal insurance dating

to provincial plans in 1940s

– Hospital insurance (1957),

medical insurance (1968),leading to Medicare (1971),

strengthened in 1984

– Universal insurance, with roots

dating to the 1930s

– Social insurance dating from

1911, with universal coveragesince 1948

– Private insurance since 1930s

– Limited social insurance, Medicare and

Medicaid since 1965

ved as a

– Capitalist system with social

responsibility

– Health care perceived as a

social/public good

– Capitalist system, heavily

deregulated

– Health care perceived as a public

good

– Capitalist system– Health care perceived as a

public good

– Capitalist system– Health care perceived as a private good

visible as

– Health care highly visible as

a political issue

– Health care visible as a political

issue, but with some bipartisan

agreement

– Health care viewed as a political

issue

– NHS viewed as public institution

– Usually a secondary issue in national elections,

although it occasionally emerges as one of

several leading issues

e of

towards

ent

nterest

– Long-standing emphasis on

collectivism and socialresponsibility

– Trustful of government

serving the public interest

– Long-standing emphasis on

collectivism and social solidarity, but

with growing individualism andacceptance of inequality

– Trustful of government and public

institutions

– Long-standing emphasis on

state paternalism

– Trustful of government serving

the public interest

– Long-standing emphasis on individualism and

self-reliance

– Trustful of democratic institutions, but distrustful

of governmental bureaucracy managing socialprograms

as a

vails

– Health care viewed as a

right

– Utilitarian view prevails

– Health care viewed as a right

– Utilitarian view prevails

– Health care viewed as a right

– Utilitarian view prevails

– Health care viewed as an entitlement right for

elderly; as an eligibility-based right for disabled

and medically indigent; and as a financiallybased privilege for remaining population

– Libertarian view generally prevails

th care systems: frameworks for analysis. Boston (MA): Boston University Health Policy Institute.

Page 10[ Series2, No. 143
ucture, by country1

stralia Canada New Zealand United Kingdom United States

67%) and

financing

nanced through

on income

insurance,

ent methods:

ls-budgets from

ate governments;

overnment;

ontrol,

with case mix

– Tax-financed system

– Private insurance is

supplemental only

– Uniform payment methods:

MDs-negotiated FFS, somecapitation; hospitals-globalbudgets

– Centralized provincial control

with federal oversight, together

with decentralization andregionalization in most

provinces

– Mixed public (78%) and

private (22%) financing

– Public-tax financed, with

revenue collected through

general taxation

– Fairly uniform payment

methods, with providersreceiving capitated payment(population-based formula) from

District Health Boards

– Centralized control

– Tax-financed system (85%

general tax revenues, 13%

insurance payroll tax,

2% user fees)

– Uniform payment methods:

hospital-based MDs-salary, FFS;

GPs-capitation, FFS, salary;NHS self-governing trustsbudgets based on contracted

fees and DRG payments

– Centralized control, but shifting

as an internal market expandsto include Primary Care Trusts

– Dominant model is employerfinanced health insurance

– Selected defined population

groups covered by publicprograms (such as medicallyindigent and elderly)

– Mixed private and public

financing

– Multiple payment methods– Decentralized control

0% private – 95% non-profit, 5% private – 52% public, 48% private – Diverse public and private,

non-profit and for-profit

specialists (55/45)

re gatekeepers

– Generalists > specialist (51/49) – Generalists > specialists (60/40) – Generalists > specialists (60/40)

– Generalists are gatekeepers

– Specialists > generalists (70/30)– Group practices increasing,

solo practices decreasing

th care systems: frameworks for analysis. Boston (MA): Boston University Health Policy Institute.

Series2, No. 143[ Page11
cess and performance, by country1,2

stralia Canada New Zealand United Kingdom United States

ontrols on state

budgets, system

– Macro-level controls on

provincial budgets, hospital

budgets, technology

– Macro-level controls on

capitated District Health Board

budgets and payments to

providers

– Macro-level controls on

capitated RHA budgets, DHAbudgets, PCT budgets, system

capacity

– Micro-level controls on financing

and payment, utilization,

technology, professional

licensure

esource allocation

or

source allocation

or

e agreements

easurement of

s and outcomes

– Macro-level provincial resource

allocation, with global budgetsand price controls, nowsub-provincial regionalizeddecision-making

– Less intensive monitoring of

clinical practices and service

utilization than in U.S.

– Macro-level resource allocation

in public sector, with

adjustments to address

imbalances in population-basedbudgets

– Less intensive monitoring of

clinical practices and service

use than in U.S.

– Macro-level resource allocation,

with population-based global

budgets for RHAs, DHAs, PCTs,

NHS trusts

– Clinical standards and

performance measures on rise

– Micro-level resource allocation

– Monitoring of practices, service

use, costs

rance – Universal insurance, with

benefits varying by province

– Universal insurance – Universal coverage – 15% uninsured

Page 12[ Series2, No. 143

nce since 1984 – Good experience – Good experience – Good experience with global

budgets

– Market reforms intended to

improve efficiency

– Poor overall experience with

various strategies

asis on technical

efficiency better

– Technical efficiency as good as

U.S.

– Administrative efficiency better

than U.S.

– Technical efficiency relatively

high

– Administrative efficiency better

than U.S.

– Strong emphasis on technical

efficiency

– Administrative efficiency better

than US.

– Technical efficiency hampered

by financial incentives, service

th care systems: frameworks for analysis. Boston (MA): Boston University Health Policy Institute.

s. Micro-level refers to institutional controls.
out health system, by country: 20041

on Australia Canada New Zealand United Kingdom United States

ge responded ‘‘rebuild

23% 14% 19% 13% 33%

of care—percentage with regular

94% 95% 97% 99% 91%

of care for more than 5 years—

50% 53% 56% 63% 37%

r—percentage with more than

14% 12% 5% 4% 26%

r provides when had to see a new

28% 40% 24% 18% 56%

e currently having

40% 34% 45% 28% 51%

sponded ‘‘yes’’ of those having

16% 10% 22% 13% 20%

of doctor appointment—percent

a doctor within past 2 years 12% 14% 13% 13% 17%

done—percentage responded ‘‘yes’’

st 2 years 7% 6% 7% 4% 14%

ommonwealth Fund 2004 international health policy survey of primary care in five countries. New York: Commonwealth Fund. Available from: http://www.cmwf.org/usr_doc/ihp_2004_survey_charts.pdf [cited

Series2, No. 143[ Page 13
Page 14 [ Series 2, No. 143

Chapter 4. Nation

Snapshots: Australia,

Canada, England, and

New Zealand

This chapter provides nationspecific overviews of national

strategies for electronic health

records (EHR) and their supporting

national health information

infrastructures (NHII), and how those

national strategies relate to population

health monitoring and research, for

Australia, Canada, England, and New

Zealand. The chapter is based upon

review of publicly available materials

published in 2005 or earlier. For each

nation, the discussion includes the

national strategy for electronic health

records, the locus of national

responsibilities, current status and plans,

the electronic health records definition,

national health information infrastructure

elements related to electronic health

records, electronic health records

storage, patient confidentiality and

participation, patient identification, and

uses for population health monitoring

and research. The chapter includes a

comparative table describing the current

status of national health information

infrastructures as they relate to

population health monitoring and

research for the four countries (see

Table 4.1).

England

Summary

Of the four countries investigated

here, England has the most thoroughly

articulated and fully developed national

strategy for electronic health records, the

supporting national health information

infrastructure, and plans for utilizing

electronic health records for population

health monitoring and research.

Consequently, the overview of England

is presented first in this chapter, and can

serve as a comparison point for the later

overviews of Australia, Canada, and

New Zealand.

England’s articulation of a national

strategy for electronic health records

started with the publication of

Information for Health: An Information

Strategy for the Modern NHS

1998–2005, A National Strategy for

Local Implementation in 1998, and has

continued since then through a series of

reports, pilots and accompanying

evaluations, and implementations (NHS

Executive 1998 Sep). NHS Connecting

for Health is the national information

technology agency responsible for

delivering the National Programme for

Information Technology within NHS

England (NHS Connecting for Health

2005, 9). NHS Connecting for Health is

now deploying the NHS Care Record

Service, with electronic patient records

(Patient Clinical Records) implemented

through local clusters and a common

national electronic health record

(National Summary Record). The

Secondary Uses Service, managed by

NHS Connecting for Health and the

NHS Health and Social Care

Information Centre, will transform

electronic health records and other data

for population health monitoring and

research and additional secondary

purposes.

Locus of national

responsibilities

Connecting for Health is the

executive agency within the National

Health Service (NHS) responsible for

developing and implementing the

English national health information

infrastructure and electronic health

record agenda (E-Health Insider 2005

Mar 22). Connecting for Health was

established as a new NHS executive

agency following the closure of the

NHS Information Authority (NHSIA) in

March 2005. The National Health

Service Information Authority was

created in 1998, with responsibility for

the National Programme for Information

Technology (NPf IT) (NHS Executive

1998 Sep, 89; NHS National

Programme for Information Technology

2004 August, 1).

Current status and plans

The current status of and plans for

electronic health records and the

supporting national health information

infrastructure in England should be

viewed within the context of three

related developments: first,

governmental modernization within the

United Kingdom; second, reform of the

National Health Service; and third,

public pressures on the NHS.

Modernising Government, a report

presented to Parliament by Prime

Minister Tony Blair in 1999, stressed

the need for ‘‘information age

government’’, leading to more

responsive public services (Prime

Minister 1999 Mar, 7, 13). Information

age government would ‘‘move from

counting what goes in, to assessing what

is being delivered’’ and would ‘‘use the

right information at the right level

(Prime Minister 1999 Mar, 37).

The movement to reform the

National Health Service was articulated

in The new NHS, a 1997 report which

pointed to ‘‘a third way of running the

NHS—a system based on partnership

and driven by performance’’

(Department of Health 1997 Dec,

Chapter 2). The new NHS would set

measurable targets for annual

improvement in local services, and

would hold newly constituted Primary

Care Groups accountable for meeting

those targets (Department of Health

1997 Dec, Chapter 4). These themes

were expanded upon in A First Class

Service: Quality in the new NHS, a 1998

report which emphasized the need to

reduce unacceptable local variations in

clinical practice in the NHS through

national standards enforced through

consistent monitoring (Department of

Health 1998 Jul). National Service

Frameworks would ‘‘set national

standards and define service models for

a specific service or care group’’ and

‘‘establish performance measures against

which progress within an agreed upon

timescale will be measured’’

(Department of Health 1998 Jul, 2.34).

A National Framework for Assessing

Performance was instituted, which

would measure overall NHS

performance in health improvement, fair
Series 2, No. 143 [ Page 15

access, effective delivery of healthcare,

efficiency, patient experience, and health

outcomes of NHS care (Department of

Health 1998 Jul, 2.27, 2.28).

A third development setting the

context for electronic health records in

England was public pressures on the

National Health Service. Three highly

visible critical reports were released

between 2001 and 2003, which

highlighted NHS shortcomings and

pointed the way to information

technology-related reforms. Learning

from Bristol: The Report of the Public

Inquiry into Children’s Heart Surgery at

the Bristol Royal Infirmary, 1984–1995

(‘‘Kennedy report’’) was published in

2001, with two important conclusions

for electronic health records and the

associated national health information

infrastructure (Department of Health

2001 Jul). First, the Kennedy report

found that ‘‘the clinicians in Bristol had

no one to satisfy but themselves that the

service which they provided was of

appropriate quality. There was no

systematic mechanism for monitoring

the clinical performance of healthcare

professionals or of hospitals’’

(Department of Health 2001 Jul, 3).

Second, the Kennedy report also

stressed that ‘‘the current ‘dual’ system

of collecting data in the NHS in

separate administrative and multiple

clinical systems is wasteful and

anachronistic. A single approach to

collecting data should be adopted, which

clinicians can trust and from which

information about both clinical and

administrative performance can be

derived’’ (Department of Health 2001

Jul, 455). Securing our Future Health:

Taking a Long-Term View (‘‘Wanless

report’’) was issued in 2002, pointing to

the ‘‘particularly poor ICT [information

and communications technology]

investment record of the UK health

service’’ (Wanless 2002 Apr, 55). The

Wanless report emphasized that

‘‘stringent [information and

communications technology] standards

should be set from the [NHS] centre to

ensure that systems across the UK are

fully compatible with each other’’

(Wanless 2002 Apr, 121). Wanless

described three alternative scenarios for

the NHS in 2022, with ‘‘the difference

between the solid [mid-level] progress

and fully [highest level] engaged

scenarios. . . [being] a dramatic

improvement in public engagement,

driven by widespread access to

information’’ (Wanless 2002 Apr, 39).

The fully engaged scenario was

characterized as follows:

‘‘Modern and integrated information

and communication technology is

being used to full effect, joining up

all levels of health and social care

and in doing so delivering

significant gains in efficiency.

Repetitive requests for information

are a thing of the past as healthcare

professional can readily access a

patient’s details through their

Electronic Health Record’’

(Wanless 2002, 15).

Finally, in his widely-publicized inquiry

into the death of a young girl from child

abuse, Lord Laming concluded that

‘‘information systems that depend on the

random passing of slips of paper have

no place in modern services. Each

agency must accept responsibility for

making sure that information passed to

another agency is clear’’ (Lord Laming

2003 Jan, 10).

Simultaneously with the above

developments, the National Health

Service expanded and further specified

its strategy for electronic health records

and the supporting national health

information infrastructure as an integral

part of governmental modernization and

NHS reform. Reducing unacceptable

variations in local NHS practice,

becoming more patient-centric, setting

and monitoring performance targets

across the NHS, and providing more

integrated (‘‘joined-up’’) NHS services

were seen as largely depending upon the

development and implementation of

electronic health records.

Information for Health: An

Information Strategy for the Modern

NHS 1998–2005, A National Strategy

for Local Implementation, released in

1998, laid out a strategy for meeting

distinct information needs for patients,

healthcare professionals, managers and

planners, and the public (NHS Executive

1998 Sep, 16). Principles for the new

strategy included person-based

information, integrated systems,

‘‘management information derived from

operational systems’’, and informationsharing across the NHS (NHS Executive

1998 Sep, 15). The creation of ‘‘lifelong

electronic health records for every

person in the country’’, which would

ultimately include primary care,

hospital, and social care information,

was at the center of the new strategy

(NHS Executive 1998 Sep, 9). The

public would be provided with ‘‘fast and

convenient public access to

information’’ and ‘‘the effective use of

NHS resources by [would be achieved

through] providing health planners and

managers with the information they

need’’ (NHS Executive 1998 Sep, 9).

Building the Information

Core—Implementing the NHS Plan,

published in 2001, reiterated the

patient-centric care information theme:

‘‘the key lies in integrating information

across the various parts of health and

social care to achieve a single or

‘whole’ system centered around the

individual that also meets the

requirements of all parts of the care

system’’ (NHS 2001 Jan, 11). Patient

access to information was again

stressed, especially within the context of

electronic records: ‘‘electronic records

are full development of a patient centred

service. They are a major step forward

in delivering the type of service people

expect from a modern NHS and ensure

that. . . patients have access to reliable

information to improve their knowledge

and involvement in their own treatment

and care’’ (NHS 2001 Jan, 25).

Electronic records would be

implemented through a combination of

‘‘Local Implementation Strategies’’ and

development and application of national

clinical and management information

standards and technical standards, with

full implementation of ‘‘integrated

primary and community EPR’’ (NHS

2001 Jan, 38, 28, 43).

Delivering 21st Century IT Support

for the NHS: National Strategic

Programme and Delivering 21st Century

IT Support for the NHS: National

Specification for Integrated Care

Records Service, Consultation Draft,

both published in 2002, represented an

evolution of the strategy for moving

towards electronic health records

(Department of Health 2002 Jun;

Department of Health 2002 Jul). The
Page 16 [ Series 2, No. 143

maturation of the ‘‘strategic programme

for IT in the NHS is the shift to more

corporate, national approaches’’,

‘‘tak[ing] greater central control over the

specification, procurement, resource

management and delivery of the

information and the IT agenda’’

(Department of Health 2002 Jul, 5;

Department of Health 2002 Jun, i).

Increased central control would be

accompanied by ‘‘national and local

implementation that are based on

ruthless standarisation’’ (Department of

Health 2002 Jun, i).

Making IT Happen: Information

about the National Programme for IT

and Creating a Patient-led NHS:

Delivering the NHS Improvement

Plan constitute the most recent

comprehensive statements relating to the

NHS England’s electronic health record

strategy (NHS National Programme for

Information Technology 2004;

Department of Health 2005 Mar). The

achievement of a ‘‘joined-up system’’ of

more integrated care, supported by

patient-centric electronic health records

and ‘‘a far higher level of information

and technology than exists currently’’

continue as core themes, as does

improved measurement of Primary Care

Trust and NHS [hospital] Trust

performance through Payment by

Results and National Service

Frameworks (Department of Health

2005 Mar, 31). The timetable for

electronic health records would now

include full implementation, with

integration of health and social care

systems, by 2010 (NHS National

Programme for Information Technology

2004 Aug, 14; Department of Health

2003 Dec 8).

Electronic health record

definition

The National Health Service

distinguishes between an electronic

patient record and an electronic health

record (Brennan 2005, 81–83; Protti

2001, 19). Electronic patient records

(EPR) can be thought of as the

transformation of current paper

‘‘organizational records’’, with entries

whenever a patient is treated, into

electronic form (NHS 2001 Jan, 25). As

stated in Information for Health in

1998, the ‘‘Electronic Patient Record’’

describes the record of the periodic care

provided mainly by one institution.

Typically this will relate to the

healthcare provided to a patient by an

acute care hospital. Electronic patient

records may also be held by other

healthcare providers, for example,

specialist units or mental health NHS

Trusts’’ (NHS Executive 1998 Sep, 25).

Implementation of electronic patient

records, now designated as ‘‘patient

clinical records’’, is occurring regionally

in five geographical clusters in England

(NHS Connecting for Health 2005 Apr,

14; NHS Connecting for Health 2005

Jul 5, 1–2). Private firms serve as Local

Service Providers for each cluster. Local

Service Providers are responsible for

developing electronic patients records in

each cluster, for delivering information

technology services, and for integrating

local systems (de Glanville 2004 Sep;

NHS Connecting for Health 2005, 13).

While general practices were initially

mandated to use only electronic patient

records developed by the Local Service

Providers responsible for their

geographical cluster, general practices

will now be provided with choice of any

practice systems accredited by any of

the Local Service Providers (Department

of Health 2005 Mar 23; E-Health

Insider Primary Care 2005 Mar 23;

E-Health Primary Care Insider 2005

Oct 11).

The electronic health record, as

differentiated from the electronic patient

record, ‘‘is used to describe the concept

of a longitudinal record of patient’s

health and healthcare—from cradle to

grave. It combines both the information

about patient contacts with primary

healthcare as well as subsets of

information associated with the

outcomes of periodic care held in the

EPRs’’ (NHS Executive 1998 Sep, 25).

In other words, a ‘‘subset of [EPRs] . . .

will contribute to a lifelong record of a

patient’s health and healthcare—the

Electronic Health Record’’ (NHS 2001

Jan, 25). The electronic health record

will consist of ‘‘essential information

[that] will be automatically uploaded’’

and will include ‘‘. . . a summary of care

encounters and clinical events [which]

will be held on a national data

repository. Now known as the National

Summary Record, the electronic health

record will be designed to ensure that

important information is available

wherever and whenever it is needed’’

(NHS Connecting for Health 2005 Apr,

8; NHS Connecting for Health 2005 Jul

5, 2–4; NHS National Programme for

Information Technology 2004, 4). The

electronic health record will include:

+ ‘‘personal health information—e.g.,

drug allergies; details of operations

and/or conditions; medication

history; pathology, radiology and

other results and a summary of

contacts with care providers

+ ‘‘demographic data—e.g., address

details, held nationally and

accessible through local systems

+ ‘‘Each patient’s NHS Care Record

will have a unique identifying NHS

number, which will also form the

common link between personal

health information and demographic

data’’ (NHS National Programme for

Information Technology 2004, 4).

The electronic health record,

together with the locally-maintained

electronic patient records, constitute the

overarching NHS Care Record (formerly

Integrated Care Record): ‘‘...a

cradle-to-grave NHS Care Record for

each patient, which will transcend

traditional care organisations’

boundaries’’ (NHS National Programme

for Information Technology 2004, 4).

The NHS Care Record will be phased in

by function, starting with patient

demographic information and recording

of allergies in 2004–2005; proceeding to

orders, results for diagnostic images and

pathways, and support for care pathways

in 2005–2006; and ultimately leading to

full functionality with full integration

between health and social care in 2010

(NHS National Programme for

Information Technology 2004 Aug, 14).

A private firm serves as the National

Application Service Provider responsible

for the development and implementation

of the NHS Care Record (Shifrin 2003

Dec 8).
Series 2, No. 143 [ Page 17

National health information

infrastructure elements related

to electronic health records

The National Programme for

Information Technology (NPfIT) within

Connecting for Health includes core

infrastructure components (NHS

Connecting for Health [hp] Programmes

and System Delivery), such as:

+ the NHS Care Records Service,

responsible for the NHS Care

Record (NHS Connecting for Health

[hp] NHS Care Records Service);

+ Choose and Book, through which

general practitioners schedule patient

appointments at dates, times, and

locations of the patient’s choosing

(NHS Connecting for Health [hp]

Choose and Book);

+ Electronic Transmission of

Prescriptions, enabling electronic

transfer of prescriptions to the

pharmacy of the patient’s choosing

and providing points-of-prescribing

and -dispensing information support

(NHS Connecting for Health [hp]

Electronic Transmission of

Prescriptions);

+ N3—the National Network,

providing broadband networking

capabilities in support of NPfIT

components (NHS Connecting for

Health [hp] N3-the National

Network);

+ Picture Archiving and

Communications Systems (NHS

Connecting for Health [hp] Picture

Archiving and Communications

Systems); and

+ Information technology supporting

general practitioners, including

QMAS (Quality Management and

Analysis System), which measures

patient quality of care and provides

feedback to Primary Care Trusts, in

support of monitoring the General

Medical Services contract (NHS

Connecting for Health [hp] What is

QMAS?).

Electronic health record storage

The NHS Care Record Service will

store patient data both locally and

centrally. ‘‘The Spine is a huge central

database which will be used to store

summary patient records of every NHS

patient in England’’ (NHS Connecting

for Health 2005 Jul 4, 12). The Spine

includes the Personal Demographics

Service, the Personal Spine Information

Service, and the Secondary Uses Service

(Cooke 2004; NHS Connecting for

Health [hp fact sheet] The Spine; NHS

Connecting for Health 2005, 13). The

Personal Demographics Service ‘‘will be

the definitive authoritative source of

patient information and their

administrative preferences’’ (Cooke

2004; NHS Connecting for Health [hp

fact sheet] NHS Personal Demographics

Service (PDS)). The Personal Spine

Information Service ‘‘will contain

enduring clinical information about

individuals’’, including medication

history and contra-indications, allergies,

and encounter or episode of care reports

(Cooke 2004; NHS Connecting for

Health 2005 Apr, 8). The Secondary

Uses Service ‘‘will provide timely,

pseudoymised patient-based data and

information for purposes other than

direct clinical care’’ (NHS Connecting

for Health [hp] Secondary Uses

Service). The Secondary Uses Service

will be discussed more thoroughly

below in Uses for population health

monitoring and research.

In addition to central storage of

identifiable data on the Spine and

pseudo-anonymized data in the

Secondary Uses Service, ‘‘full

[Electronic Patient] records will remain

locally where care is delivered. As

indicated above, summary information

will be automatically ‘uploaded’ from

local electronic patient records to a

summary record [on the Spine]’’, which

‘‘will show where more detailed

information is stored locally and also

record an individual’s consent for care

professionals to view their health

information’’ (NHS Connecting for

Health 2005 Apr, 8). In February 2005,

the first general practice was connected

to the Spine (E-Health Insider 2005 Feb

4; E-Health Insider Primary Care Feb 7;

NHS Connecting for Health no date, 7).

The location of local storage has been

under discussion. A recommendation for

a ‘‘three level architecture’’ emerged

from the Electronic Record

Development and Implementation

Programme (ERDIP), which apparently

would have included storage of

electronic patient records at both the

local healthcare provider level and at the

Strategic Health Authority level (NHS

Information Authority 2003 Apr 11, 14).

However, it is not now clear whether

such a three level architecture will be

uniformly implemented.

Patient confidentiality and

participation

In 1997, Dame Fiona Caldicott and

her colleagues pointed out that ‘‘the

introduction of new technologies. . .

brings with it new risks, and concerns

over the confidentiality of patient

information have been raised in the last

few years as a result of the increasing

use of information technology within the

health service, and the possibility that

unauthorized or inappropriate access to

personal information may become more

likely as a result’’ (Caldicott Committee

1997 Dec, 5). Substantial legal, policy,

and research attention has been focused

on patient consent requirements for

Electronic Patient Records and

Electronic Health Records. The legal

framework for consent has been set by

the Data Protection Act of 1998, the

Human Rights Act of 1998, common

law, and the Health and Social Care Act

of 2001 (Newton and Garner 2002,

33–36, 40). In sum, the legal framework

mandates that ‘‘patient information may

be collected and stored in computerised

records, provided the purpose of the

record is clearly defined, data is held

securely and confidentially, and the

patient is able to check the content and

accuracy of the record. Patient

identifiable data may not be used

without the patient’s consent, unless

exemption has been obtained’’ (Adams

et al. 2004, 872). As the former NHS

Information Authority indicated,

‘‘depending on the circumstances,

consent can either be assumed or

actively asked for’’ (NHS Information

Authority 2002 Oct, 6). The National

Health Service distinguishes between

express consent, in which ‘‘consent is

expressed orally or in writing’’, and

implied consent, in which ‘‘consent is

inferred from a person’s conduct in the

light of facts and matters which they are

aware of, or ought reasonably to be
Page 18 [ Series 2, No. 143

aware of, including the option of saying

no’’ (Newton and Garner 2002, 26;

Tranberg and Rashbass 2004, 33).

Implied consent has been operationally

defined as meaning that ‘‘information

concerning a patient should normally be

available to any clinician giving clinical

care to that patient within a defined

local health network, unless that patient

has requested that such sharing should

not occur’’ (General Practitioners

Committee 2003 Sep, 22). The type of

consent required has been interpreted to

vary with the sensitivity of the data.

Public opinion regarding patient

consent for use of data contained in

electronic health records has been

explored in National Health Servicesponsored population-based surveys,

focus groups, and in several Electronic

Record Development and

Implementation Program sites. A 2002

population-based survey found that 35%

of respondents wanted express consent

each time their electronic data were

shared for any purpose, and 30% wanted

express consent each time their

electronic data were shared for other

than treatment purposes (NHS

Information Authority 2003b 27).

ERDIP site evaluations found that

‘‘there was no evidence that people

were seriously concerned about their

information being shared within an

electronic health record’’ and ‘‘implied

consent is acceptable to most classes of

patient, with certain exceptions’’ (Adams

et al. 2004, 874; Foord et al. 2003 Jan

31, 78). On the other hand, a United

Kingdom-wide survey commissioned by

the British Medical Association revealed

that ‘‘81% [of respondents] were

worried that non-clinicians and those not

involved with their care would be able

to see their information’’ (Carvel 2005

Jun 30; E-Health Insider 2005 Jun 30).

Research results also indicated that

concerns about patient consent for

provider access not surprisingly varied

with both the perceived sensitivity of

the information and the site of care,

with patients assuming a greater need

for sharing of information in secondary

care (Health Which? 2003 Oct, 11; NHS

Information Authority 2002 Oct 24, 15).

The ‘‘sealed envelope’’ is the

National Programme for Information

Technology’s method for providing

patients with the capacity for using

express consent to limit sharing of

information contained in the NHS Care

Record. Richard Grainger, the Director

General for NHS IT, indicated in

February 2005 that ‘‘the idea of a sealed

envelope arose from research with

patients and the public and through

wider consultation with the public and

the NHS. It had strong support as a way

of allowing people to restrict

particularly sensitive information, such

as gynaecological and metal health

information, from being routinely shared

(with those who have the right access

privileges) without having to block

sharing of the whole record’’ (NHS

Connecting for Health [hp] Questions

and answers from a recent King’s Fund

Seminar). In the NHS Care Record

Guarantee, announced by Health

Minister Lord Warner in May 2005, the

NHS pledged that ‘‘you can choose not

have information in your electronic care

records shared’’ (Department of Health

2005 May 23; NHS 2005 Jun 2, 5).

Practitioners can either ‘‘break the seal’’

with the patient’s express consent, or ‘‘if a

care professional considers it necessary to

see this information and is unable to get

the patient’s consent’’ (NHS Connecting

for Health 2005 Apr, 21).

In addition to patient consent for

the sharing of specific parts of the

electronic record beyond the immediate

healthcare provider, the National Health

Service also has confronted issues

relating to opting out entirely from

electronic record keeping in local

electronic patient records and the

national electronic health record.

Confusion and subsequent controversy

about patient consent and opting out

arose from two sources. First, at least

one Electronic Record Development and

Implementation Program site apparently

permitted patients to opt out of

electronic record-keeping, while another

site apparently adopted a ‘‘sealed

envelope’’ approach (South Staffordshire

Health Community 2002 Mar;

Hampshire and Isle of Wight Strategic

Health Authority [hp] How to withhold

your record; Hampshire and Isle of

Wight Strategic Health Authority 2004

Nov 30, 3). Second, the national health

minister, indicated that patients could

opt out of inclusion of data in the

National Care Records Service (Carvel

2005 Jan 14), followed by a wellpublicized instance in which a practice

manager failed in her attempts to have

all instances of her personal information

removed from the NHS-Wide Clearing

Service and other downstream data

repositories (E-Health Insider 2005

Mar 30).

The National Health Service

position seems to be that patients cannot

opt out of electronic record keeping;

however, patient rights to opt out of

electronic patient records and electronic

health records has engendered both

controversy and confusion within the

NHS, between the NHS and Parliament,

and between the NHS and the British

Medical Association (Cross 2005 Feb 5;

E-Health Insider 2005 Jun 14; E-Health

Insider 2005 Aug 1; E-Health Insider

2005 Oct 18; E-Health Insider Dec 6;

Lettice 2005 Mar 30). In keeping with

the recommendations of the NHS’

Ethics Advisory Group of the Care

Records Development Board, Dr. Phil

Walker, the head of digital information

policy for the Department of Health,

wrote in a widely publicized e-mail note

that ‘‘patients do not have any right to

determine what is recorded, nor to veto

the media on which it is recorded etc.

The Government is convinced that

patients will benefit from a shared

record system. . . Whilst clinicians might

choose not to record information with

NCRS systems[,] it is not because of

any right of veto given to patients’’

(NHS National Prgramme for

Information Technology, Ethics

Advisory Group 2004 Dec 3, 4–5, 12;

Walker 2005 Mar 3; E-Health Insider

Primary Care 2005 Apr 5; BBC News

2005 Mar 30). The only instance in

which patients can opt out of electronic

record-keeping is if inclusion of their

records would entail ‘‘significant

damage or distress’’ (Walker 2005 Mar

3; NHS National Programme for

Information Technology Ethics Advisory

Group 2004 Dec 3, 4; E-Health Insider

2005 Mar 8). The complexities of

actually implementing the sealed

envelope and highly limited patient

opt-out has engendered concerns over

the appropriate balance between patient

consent, on the one hand, and costs and

efficiency, on the other hand: ‘‘We can
Series 2, No. 143 [ Page 19

have a high-quality and well-regulated

health service or a highly confidential

service where data is not shared when

needed, but trying to have both may be

impossible, and certainly expensive’’

(Singleton 2005 Apr 5).

Patient identification

Patient identification for the NHS

Care Record is through the NHS

number, initially instituted in 1948 and

revised in 1996 (National Health Service

Information Authority [hp] NHS

Number; National Health Service

Information Authority [hp] NHS

Numbers for Babies). The NHS number

is used on the NHS medical card and

can be traced through the NHS Strategic

Tracing Service (National Health

Service Information Agency [hp] NHS

Strategic Tracing Service; Rivett No

Date). The NHS number has been issued

upon officially joining the NHS. Since

2002, the NHS number has also been

issued at birth through the NHS

Numbers for Babies (NN4B) service,

instead of upon completion of civil birth

registration as previously done (National

Health Service Information Authority

[hp] NHS Number for Babies). NN4B is

viewed as a means of improving

neonatal surveillance. Questions around

the universal use of the NHS number

have been raised, and in 2004 the NHS

Information Standards Board announced

that NHS Trusts would be required to

use the NHS number as their unique

identifier (Department of Health 2001

Sep 25, 38; E-Health Insider 2004

Mar 10).

Issues related to the use of the NHS

number for patient identification are

integrally related to the ‘‘sealed

envelope’’ and other approaches for

maintaining patient confidentiality. In its

discussion of protecting the

confidentiality of patient records, the

Caldicott Committee report

distinguished between identified patient

data and identifiable patient data:

‘‘Whilst it may be necessary for a

patient to be identifiable, . . . outside of

the provision of care it should rarely be

necessary for individuals to be

identified. For an individual to be

identifiable, but not identified, there

must be a mechanism for using the

information available to establish

identity’’ (Caldicott Committee 1997

Dec, 21). The NHS has built upon the

Calidicott Committee report through

recognizing a hierarchy of identifiability,

including three general levels. First,

identifiable electronic data are necessary

for direct healthcare, and the ‘‘sealed

envelope’’ discussed earlier pertains to

these identifiable data. Second,

pseudo-anonymized data are used in

indirect healthcare, for which linkable

data are necessary via the mechanism of

an encrypted individual identifier. Third,

anonymized data are used for statistical

analyses outside of healthcare (Singleton

et al. 2001 Jan, 25; General Practitioners

Committee 2003 Sep, 24–26). The

‘‘pseudonomisation’’ required for

indirect healthcare uses has further

levels, such as use of the NHS number

or other coded information to identify

individuals, ‘‘information in which

identifiers have pseudonymised, in a

reversible manner’’, and ‘‘information in

which identifiers have been

pseudonymised, but with an irreversible

one-way encryption facility; this will

enable subsequent linkage of data

relating to the same individual’’ (Walker

No Date). Since pseudo-anonymized

(‘‘pseudonymised’’ in NHS parlance)

and anonymized data protect the identity

of individual patients and since the

pseudo-anonymized and anonymized

data are used only for aggregate

statistical purposes, the sealed envelope

apparently does not apply. National

Health Service-sponsored populationbased survey and focus group research

has revealed public support for use of

anonymized data outside of direct

healthcare, without express consent and

apparently without a sealed envelope

(NHS Information Authority 2003b, 10,

15–17).

Uses for population health

monitoring and research

The National Health Service

commitment to development and

deployment of electronic health records

and electronic patient records has been

accompanied by recognition of their

potential for population-based

monitoring and research. In 1998,

Information for Health posited ‘‘an

integrated model for information’’, in

which EPRs and EHRs would feed

analyses for public health, clinical

governance, health improvement

programs, and performance management

(NHS Executive 1998 Sep, 18). See

Figure 4.1. Information for Health

envisioned ‘‘. . . a fundamental change

in emphasis of Health Authority

information responsibilities (from

contracting to public health and service

effectiveness) and a need to establish a

two-way flow of information between

the NHS and the communities it serves’’

(NHS Executive 1998 Sep, 66). EPRs

and EHRs would ‘‘. . . provide the

source of the base anonymised and

aggregated data to support the clinical

audit process and over time they will

contribute to the growing knowledge

base informing the development of

national and local guidelines’’ (NHS

Executive 1998 Sep, 68). The

development of National Service

Frameworks in 2000 and 2001 for

cancer, older people’s services, mental

health, coronary disease, and diabetes,

covering roughly half of NHS spending,

further contributed to the potential

importance of EPRs and EHRs as

analytic data sources (NHS 2001 Jan,

19). EHRs were also recognized as

essential in the further development of

population-based disease registries

(Newton and Garner 2002, Feb, 24).

The extent to which EPRs and EHRs

were gaining importance as potentially

supporting statistical analyses was

indicated by Professor Denis Protti’s

2002 comment in his NHScommissioned review of progress

towards achievement of Information for

Health, that ‘‘one of the many

observations I made this year was the

apparent shift from the primary target of

Information for Health in supporting

day-to-day clinical practice to one of

collecting data for retrospective analysis

such as clinical governance’’ (Protti

2002 Jun 11, 7).

Electronic Record Development and

Implementation Program site evaluations

revealed the possible utility for

secondary analysis of anonymized and

linked data sets joined in an electronic

health record (Sanderson et al. 2004).

ERDIP site evaluations also exposed

problems requiring national attention if
Page 20 [ Series 2, No. 143

Figure 4.1. England’s National Health Service integrated model for information

SOURCE: National Health Service Executive (1998 Sep). Information for Health: An Information Strategy for the Modern NHS, 1998–2005, A National Strategy

for Local Implementation. London (UK): National Health Service Executive; 18.

electronic health records were to

become useful as an ongoing data

source for population monitoring and

research, such as multiple coding

schemes, lack of consistency and

completeness in data recording, and

additional quality issues (NHS

Information Authority 2003a; Sanderson

et al., 2004). Evaluations pointed to the

need for the NHS Information Authority

to ‘‘offer an ‘anonymisation service’ to

other NHS organizations, providing

secure facilities for ‘pseudonymisation’

. . . then it should be far easier for

confidentiality to be supported by not

using personal data for other than direct

medical care’’ (Singleton 2002, 9).

Early conceptualizations of

operationalizing the NHS vision of

using electronic health records and

electronic patient records for population

health monitoring and research included

the development of ‘‘a population based

record that is a comprehensive list of

people within a defined population

containing sufficient, accurate and

timely information to enable the

planning and provision of health

services’’ (Department of Health 2001

Sep 25, 3). The population record could

bring together, in a single virtual

location, the multiplicity of current

population data sets, streamlining data

collection and analysis, joining up

population based data through

patient-centric record linkage, and

anonymizing the data for analysis

(Department of Health 2001 Sep 25,

18–20). The 2001 Strategic Outline
Series 2, No. 143 [ Page 21

Case for Population Records pointed to

five content options for supporting

Population Records, with the most

elaborate option including extended

demographics, index pointers to other

data systems with additional information

about each patient, a range of patient

clinical information, and anonymized

information for authorized users, with

these options further expanded upon in

the 2003 Strategic Outline Case for a

National Patient Record Analysis

Service (Department of Health 2001 Sep

25, 25–26; Department of Health 2003

Jan-Feb). Population records would

support ‘‘. . . managers, researchers and

other professional not involved in direct

patient care—for example

epidemiologists—to: 1. have ready

access to aggregated and anonymised

information to support research,

planning and management of care

services; [and] 2. be able to use high

quality information in support of the

implementation of clinical governance

and improvement of public health’’

(Department of Health 2002 Jul 26, 18).

The current National Health Service

solution to building a population record

and making data culled from the NHS

Care Record available for population

health monitoring and research and

other statistical analyses is the NHS

Care Record Secondary Uses Service

(SUS). The Secondary Uses Service

forms part of the overall NHS Care

Record infrastructure being deployed by

the National Application Service

Provider and is being jointly delivered

by the Health and Social Information

Centre and NHS Connecting for Health

(NHS Health and Social Care

Information Centre 2005 Apr 1; NHS

[hp] Welcome to the Health and Social

Care Information Centre). The mission

of the Secondary Uses Service is to

‘‘provide the NHS with higher quality

data to enable investigation of trends

and emerging health needs which can

inform public health policy and

planning’’ (NHS Connecting for Health

2005 Oct, 27). The SUS is envisioned

‘‘to be the central repository of health

data for secondary uses’’, with ‘‘most

data to be collected or derived from

clinical systems as a by-product of

direct care’’ and also to ‘‘have

non-patient record based data, as well as

all NHS related activity’’ (NHS Health

and Social Care Information Centre

2005 Apr 1). The SUS will provide

‘‘. . . patient-based data and information

for purposes other than direct clinical

care’’, including planning, public health,

clinical audit, benchmarking,

performance improvement, research, and

clinical governance (NHS Connecting

for Health [hp] Secondary Uses

Service).

As described by Jeremy Thorp, the

chair of the Secondary Uses Service

project board, the SUS will adopt a

multi-layered approach to protecting the

confidentiality of data subjects,

including controlled access to data,

pseudonomisation, and various

‘‘presentation layers’’ enabling filtered

‘‘views’’ of data (E-Health Insider 2005

Jul 8). The SUS will transform and

pseudonymise data from the Personal

Demographics Service, the Personal

Spine Information Service, and other

data sources such as the Office of

National Statistics (NHS National

Programme for Information Technology

2004 Jun 24, 5–6; Cooke 2004 Jun 9).

See Figure 4.2. Data will be held in a

secure data base, and made available

through an ‘‘extract service for standard

routine and ad-hoc queries’’, ‘‘on-line

analyses via web query’’, ‘‘distributed

queries involving SUS and local data’’,

and ‘‘scheduled analysis—blocks of

data’’ (NHS National Programme for

Information Technology 2004 Jun 24,

12). SUS users will include NHS Trusts

of all types, Strategic Health Authorities,

Public Health Observatories, the

Department of Health, NHS agencies,

registries, researchers, professional

bodies, and local governments (NHS

National Programme for Information

Technology 2004 Jun 24, 13–14).

Data will be phased into the

Secondary Uses Service in at least five

stages. The initial stage, in 2005, will

include data from the Personal

Demographics Service (with birth and

death status), the Mental Health

Minimum Data Set, and admitted patient

care, elective admission, accident and

emergency, mortality, and other data sets

(NHS National Programme for

Information Technology 2004 Dec, 14).

The fourth stage of SUS will enable

‘‘. . . data linkage across the whole

patient journey. SUS content [will]

expand to reflect the full range of NHS

services (primary, community and

secondary care) and enables SUS to

explore the potential for generating

central returns and other national dataset

requirements directly from the SUS’’

(NHS National Programme for

Information Technology 2004 Dec, 20).

In the fifth and final stage, the SUS will

become ‘‘the primary source of health

data for non-care purposes, supporting

the full range of information

requirements at local, community and

national levels’’ (NHS National

Programme for Information Technology

2004 Dec, 21).

The Secondary Uses Service intends

to support the complex of standards,

quality requirements, criteria, targets,

and benchmarks developed by the

Department of Health and the NHS

(Department of Health 2004 Jul, 5).

These include the four National Health

Service priority condition areas of

cancer, coronary heart disease, diabetes,

and mental health and their

accompanying targets, the Department

of Health’s National Healthcare

Standards in seven domains, and the

‘‘Star Ratings’’ (Department of Health

2001 Mar, 66; NHS Executive 1999

Jun; NHS Health Development Agency

2004, 2, 3; NHS in England [hp] Star

Ratings; Stevens 2004). The new

General Medical Services contract,

which ‘‘. . . rewards GP practices for

providing specified services, delivering

quality and involving patients’’, will

also require support, as will the Quality

and Outcomes Framework (QoF), which

will ‘‘measure achievement against a

scorecard of 146 evidence-based

indicators’’ in the clinical,

organizational, patient experience and

additional services domains’’ and will

produce results for general practioner

practices and Primary Care Trusts in

England (NHS National Programme for

Information Technology No Date, 1).

The Quality and Outcomes Framework

Management and Analysis System

(QMAS) has been designed to

automatically produce the Quality and

Outcomes Framework clinical point

scores from clinical disease registers

defined in the General Medical Services

(General Practitioners Committee 2004
Page 22 [ Series 2, No. 143

Figure 4.2. Data flows for England’s Secondary Uses Service

SOURCE: NHS Connecting for Health [hp]. Secondary Uses Service (SUS). Available from: http://www.connectingforhealth.nhs.uk/publications/ [cited 2006 Jan 10].

Oct; Roscoe 2004 Aug 5). Finally, the

SUS will also support the new Payment

by Results ‘‘. . . system, planned to be

fully operational by April 2008, [which]

is designed to underpin patient choice

by enabling money to ‘follow the

patient’, thus rewarding providers for

the activity they undertake’’ (Hunter and

Marks 2005 Feb, 4). SUS outputs will

be phased in over several years (NHS

National Programme for Information

Technology 2004 Dec, 7–13).

Australia

Summary

A national strategy for electronic

health records and the supporting

national health information infrastructure

was formulated in the HealthConnect

Business Architecture version 1.9,

published by the Australian Department

of Health and Ageing’s HealthConnect

Program Office in November 2004

(HealthConnect Program Office 2004a).

The proposed architecture included the

building of a national health information

network, with voluntary patient

provision of data into electronic health

records. A series of event summaries

would form the core of the electronic

health records. Electronic health records

would be stored in a federated

HealthConnect record system for clinical

uses and in the National Data Store for

secondary uses. These secondary uses

would include the provision of primarily

deidentified data for population health

monitoring and research. With the

formation of the National E-Health

Transition Authority Ltd in July 2005 by

the Commonwealth, state, and territorial

governments, the HealthConnect

architecture is now being re-examined

and implementation will depend upon

the outcomes of the National E-Health

Transition Authority’s current initiatives.

Locus of national

responsibilities

The locus of responsibilities for the

development of a national Australian

strategy for electronic health records and

the supporting national health

information infrastructure changed

substantially during 2005

(HealthConnect Program Office 2004b).

National strategy is now shared between

one governmental organization and one

quasi-governmental organization with

complementary roles: the HealthConnect

Program Office and the National

E-Health Transition Authority (NEHTA).

The HealthConnect Program Office,

located within the Australian

Department of Health and Ageing, has

been responsible for the management of

the HealthConnect trials for electronic

health records, evaluation of those trials,

and design of key documents relating to

the future architecture and national
Series 2, No. 143 [ Page 23

implementation (HealthConnect Program

Office [hp] 2004). During 2005, the role

of the HealthConnect Program Office

changed from managing the

HealthConnect electronic trials and

designing a national EHR architecture

with HealthConnect ‘‘as a technical

solution to address healthcare reform in

Australia’’, to ‘‘ensur[ing] coordinated

activity between all areas of the health

care sector, underpinned by the

mandatory application of specifications,

standards, and infrastructure developed

by the NeHTA’’ (HealthConnect 2005

Oct, 2; HealthConnect [hp]

HealthConnect and the information

management and information

communications technology industry).

The National E-Health Transition

Authority, Limited was established as a

not-for-profit company in July 2005 by

the Australian Health Ministers’

Advisory Council, including Australian

federal, state, and territorial

governments and is governed by a board

of directors made up of CEOs from

health departments across Australia.

NEHTA’s role is ‘‘...to develop better

ways of electronically collecting and

securely exchanging health information’’

with ‘‘a key task. . . to establish the

fundamental standards necessary to

progress e-health. These standards will

need to be adopted by software

developers so that the promise of

e-health can be delivered on a national

scale’’ (National E-Health Transition

Authority [hp] Fact sheet—standards

implementation). NEHTA will ‘‘oversee

and progress national IM&ICT priorities

that underpin HealthConnect’’

(HealthConnect Program Office 2004b),

including developing timelines, business

cases, standards, and provides advice

and resources (Department of Health

and Ageing 2005).

Current status and plans

The current status of and plans for

the development of a national strategy

for electronic health records and the

supporting national health information

infrastructure must be viewed within a

developmental context. In 2000,

Australia’s National Electronic Health

Records Taskforce presented its report

on A Health Information Network for

Australia, which called for the

establishment of a national approach to

sharing EHRs in Australia, including:

+ the ‘‘building of a national health

information network . . . which

provides for the systematic

collection of clinical and

demographic information at the

point of care’’;

+ ‘‘this information would take the

form of event summaries . . . rather

than the full set of information that

providers may collect for each

episode of care’’; and

+ ‘‘Information would be collected

only for those consumers and

providers who agreed to participate’’

(National Electronic Health Records

Taskforce 2000b, xxii-xxiii).

This basic framework formed the

basis for the development of

HealthConnect in 2001. In 2002,

HealthConnect trials were instituted in

North Queensland, focusing on

pre-operative hospital assessment; the

Northern Territory, focusing on services

in remote areas; New South Wales,

focusing on chronic disease management

and a hospital-based children’s health

information network; and Tasmania,

focusing on adults with diabetes and

their healthcare providers (South

Australian Department of Human

Services 2004). These trials have been

extensively evaluated (HealthConnect

Program Office 2003).

While the national approach set

forth in 2000 by the National Electronic

Records Taskforce remains operative,

three important changes seem to have

occurred during 2005. The first change

is the before-mentioned shift from

HealthConnect as an overarching

national technical solution to

HealthConnect collaborative process to

‘‘leverage existing projects and

infrastructure [in Australian states and

territories] to achieve short-term results

and drive longer term outcomes. This

approach will avoid long delivery

timeframes by building ‘from scratch’ in

isolation from existing initiatives’’

(HealthConnect 2005 Jul 6, 7). The

second change is HealthConnect’s

moving states, territories, and local

services towards compliance with

standards set by the National E-Health

Transition Authority, through

regionally-based process of planning for,

assessing, and developing compliance

with NEHTA standards for

interoperability of EHRs and supporting

national health information infrastructure

elements. The third change is a greater

emphasis on ‘‘a market place that adopts

standards to enable organisations, people

and systems to interoperate. This

approach depends for its success on a

highly competitive market place that

competes on functionality, service

quality and price’’ (Reinecke 2005 Aug

1, 3; Brewin 2005 Aug 22). NEHTA’s

role, complementary to HealthConnect’s

role, ‘‘...is to identify, and prepare

national standards for, the most

important types of clinical information

to be captured by e-health systems’’

(National E-Health Transition Authority

[hp] Fact sheet—clinical information

specification).

Electronic health record

definition

The recent evolution of the

Australian national strategy for

electronic health records and the

supporting national health information

infrastructure seems to include an

evolution in the working definition of an

electronic health record. HealthConnect

defined the electronic health record as:

+ ‘‘a longitudinal collection of health

information relating to a single

consumer that is stored within the

HealthConnect system itself’’

(HealthConnect Program Office

2004a, 129); and

+ ‘‘a series of event summaries, each

containing key information about a

specific healthcare event such as a

general practitioner consultation,

hospital admission or discharge,

community health centre visit,

pathology test of a pharmacy

dispensing a prescription’’

(HealthConnect Program Office

2004a, 1).

The HealthConnect EHR ‘‘will not

replace providers’ own clinical records

or clinical information systems.

Providers will continue to maintain their

own consumer health records but may

choose to incorporate selected
Page 24 [ Series 2, No. 143

HealthConnect EHR information in their

records or clinical information systems

(HealthConnect 2004a, 2).

The National E-Health Transition

Authority provides definitions of

electronic health records in its glossary

(National E-Health Transition Authority

[hp] Glossary). These definitions, based

on standard sources such as Standards

Australia, share HealthConnect’s earlier

definitional emphasis on longitudinal

data and conceptual separation of

clinical care functions from the EHR

itself (Standards Australia 2005). As will

be discussed immediately below in

National health information elements

related to electronic health records,

NEHTA also has continued

HealthConnect’s emphasis on health

event summaries. However, the storage

of electronic health records within the

HealthConnect system itself, referred to

in HealthConnect’s earlier electronic

health records definition, is omitted

from the NEHTA definition; this is a

potentially important change that may

relate to the uses of EHRs for

population health monitoring (see

section below on Uses for population

health monitoring and research).

National health information

infrastructure elements related

to electronic health records

The HealthConnect Business

Architecture version 1.9, published in

November 2004, identified key national

health information elements relating to

electronic health records (HealthConnect

Program Office 2004a). Central to the

HealthConnect conception of the

electronic health record and its

supporting national health information

infrastructure were event summaries and

electronic health record lists (see

Figure 4.3). Event summaries would

include information such as

observations; allergies; test orders and

results; diagnoses; care plans; services

and treatments provided, including

immunizations; medications prescribed

and dispensed; and referrals

(HealthConnect Program Office [hp]

Event summaries). EHR lists will be

both derived automatically from the

event summaries, and also maintained

by providers when clinical judgment is

required (HealthConnect Program Office

2004a, 136–7). Data from event

summaries and EHR lists will be made

available to providers and patients

themselves through pre-defined views.

The National E-Health Transition

Authority’s twelve major 2005–2006

initiatives continue HealthConnect’s

emphasis on event summaries, through

the planned development of twelve

national event summary templates in its

clinical information initiative (National

E-Health Transition Authority [hp]

Initiatives—major NEHTA initiatives

2005–06). The development of a

national minimum hospital discharge

summary template has been identified as

especially important; other priority

events identified by NEHTA include the

initial health profile, medical

consultation—general practitioner,

medical consultation—specialist,

hospital discharge—emergency,

pharmacy provision, community based

health consultation, allied health

consultation, and referral (National

E-Health Transition Authority 2005 Jun

16, 17; National E-Health Transition

Authority 2005 Jun 17, 4). In addition

to NEHTA’s clinical information

initiative with its event summary

templates, other NEHTA initiatives for

2005–2006 include a managed approach

to clinical terminologies, an individual

healthcare identifier (see Patient

Figure 4.3. Key elements of Australia’s HealthConnect

HealthConnect

Participants

+ Consumers

+ General practitioners, specialists

+ Community nurses

+ Private allied health care providers,

e.g., physiotherapists, podiatrists,

optometrists

+ Community pharmacists

+ Hospital clinicians

+ Emergency department clinicians

+ Aged care workers

Secondary Users

+ Researchers

+ Managers/planners

+ Evaluators

HealthConnect Repository

Event summaries including:

+ Healthcare consultations

+ Diagnostic test results

+ Hospital discharge information

+ Immunisation information

EHR lists including:

+ Current medications

+ Principal diagnoses

+ Allergies and alerts

SOURCE: HealthConnect Program Office (2004 Nov). HealthConnect Business Architecture version 1.9. Canberra ACT (AU): Commonwealth of Australia; 2.
Series 2, No. 143 [ Page 25

identification below), an e-health

consent framework (see Patient

confidentiality and participation below),

and specifications for developing a

national architecture for EHRs (National

E-Health Transition Authority [hp]

Initiatives—major NEHTA initiatives

2005–06).

Electronic health records

storage

The HealthConnect Business

Architecture version 1.9 specified that

each HealthConnect electronic health

record would be stored in two locations:

a HealthConnect Record System and the

National Data Store. Taken together, the

national network of interoperable Health

Record Systems would constitute an

electronic health record repository,

supported by national-level common

services. The ‘‘federated model’’ of

Health Record Systems would enable

healthcare provider and consumer access

to the views of event summaries and

lists described above. The National Data

Store would maintain archival copies of

EHRs (HealthConnect Program Office

2004a, 7, 35, 110–13). NEHTA’s

electronic health record design initiative

for 2005–06 includes ‘‘defin[ing]

requirements for a national network of

shared electronic health records’’; this

work remains in progress and EHR

storage under the NEHTA business

architecture has not yet been specified

(National E-Health Transition Authority

[hp] Initiatives—major NEHTA

initiatives 2005–06).

Patient confidentiality and

participation

The specifics of patient participation

and control over their electronic health

records have been a topic of much

consideration in Australia (Australian

Health Information Council 2005). At

least three population-based surveys

have been conducted since 2001 dealing

with issues directly relevant to patient

participation in HealthConnect

(Campbell Research and Consulting

2004; Roy Morgan Research 2001; Roy

Morgan Research 2004). Sixty percent

of respondents in a 2004 survey agreed

that ‘‘your doctor should be able to

discuss your personal medical details

with other health professionals—in a

way that identified you—WITHOUT

YOUR CONSENT if they thought this

would assist your treatment.’’ On the

other hand, the same survey also

revealed that 64 percent of respondents

felt that inclusion in a national health

database, such as the HealthConnect

National Data Store, should be voluntary

(Roy Morgan Research 2004, 46, 49). In

addition to survey research, focus group

research has been conducted on patient

participation and electronic health record

privacy (Campbell Research and

Consulting 2004; Consumers’ Health

Forum 1998; TQA Research 2004), and

several issues commentaries have been

developed (Office of the Privacy

Commissioner 2004a; Office of the

Privacy Commissioner 2004b;

Consumers’ Health Forum 2001;

HealthConnect Program Office 2002;

NSW Ministerial Advisory Committee

on Privacy and Health Information

2000; Paterson and Iacovino 2004).

The HealthConnect trials were

designed to test several different consent

models for patient participation, such as

the Northern Territory model ‘‘in which

consumer consent is obtainined before

the inclusion of an event summary on

thte HealthConnect record and prior to a

provider accessing an individual’s

HealthConnect record’’, the Tasmania

model in which consumers provide

‘‘standing consent at registration’’ in

HealthConnect, and the New South

Wales model in which consumer consent

at registration includes the ‘‘capacity to

exclude particular individuals from

accessing records’’ (Aitken and Gilhotra

2004, 19; HealthConnect Program

Office No Date a; HealthConnect

Program Office No Date b). Patient

participation in HealthConnect would be

voluntary, and electronic health records

would only be maintained for those who

specifically register for HealthConnect

(HealthConnect Program Office 2004a,

25, 52; HealthConnect Program Office

[hp] Q & As). The HealthConnect

Business Architecture version 1.9

indicates that patients must provide

informed consent ‘‘before their EHR

and other personal information can be

collected, accessed, used or disclosed by

HealthConnect’’ (HealthConnect

Program Office 2004a, 52). This is

essentially ‘‘push’’ access for consent,

with consumers deciding when their

data should be ‘‘pushed’’ into EHRs at

the Health Records Systems and the

National Data Store, and when it should

not (Gunter and Terry 2005). Some

formulations of HealthConnect patient

participation and consent indicated that

patients could control what events

would be included in their electronic

health records, what providers and

provider organizations could have access

to their EHRs, and for what purposes

that access would be provided, resulting

in ‘‘layered-consent’’ (Crompton 2004;

HealthConnect Program Office [hp] Q&

As).

The National E-Health Transition

Authority’s major initiatives for

2005–06 include ‘‘developing e-health

consent frameworks to support other key

NEHTA initiatives—-the shared

electronic health record. . . [and] the

Individual Healthcare Identifier’’

(National E-Health Transition Authority

[hp] Initiatives—major NEHTA

initiatives 2005–06). NEHTA has

indicated that its ‘‘recommended

approach involves taking a holistic view

of privacy requirements, providing

strong privacy protection while enabling

the implementation of an operationally

and financially feasible SEHR

[electronic health record] system. It does

not support an emphasis on ‘consent’ to

the exclusion of other important privacy

requirements and argues that consent

and privacy requirements must be

assessed against specific initiatives or

proposals’’ (National E-Health Transition

Authority [hp] Initiatives—major

NEHTA initiatives 2005–06). NEHTA’s

approach to patient consent reflects a

key lesson learned from the

HealthConnect trials: ‘‘keep consent

simple’’ (Richards 2005 Nov 25). The

NEHTA approach would presumably

require ‘‘trade-off [on] issues such as a

patient’s desire to protect confidentiality,

the impact of the consent systems on

clinical work, and the cost of designing

and maintaining a potentially highly

complex system’’ (Coiera and Clarke

2004, 137).
Page 26 [ Series 2, No. 143

Patient identification

Australia does not now have a

national system for unique identification

of its citizens or residents. A Medicare

number system exists to enable

reimbursement for healthcare provider

fees, and Standards Australia issued a

Healthcare Client Identification standard

in 2002 (Australian Institute of Health

and Welfare 2004, 46). National

identifiers in Australia have a

controversial history, based in the

Australia Card proposal of 1986, which

would have mandated a national

population register, a national identifier,

and an associated identification card

(Clarke 1987; Greenleaf 1987).

Although the Australia Card was never

implemented, the Australia Card debate

has been cited as a reason for especially

careful public and governmental review

of patient identification strategies for

HealthConnect. However, a 2004

population-based survey found that 57%

of respondents agreed that ‘‘to enable

the government to better track the use of

HEALTH SERVICES, all individuals

should be allocated a NUMBER and

that numbers should be used when

accessing ANY health service or

facility’’ (Roy Morgan Research 2004,

48).

As with patient participation in

HealthConnect and patient controls of

their electronic health records, the

specifics of patient identification in

HealthConnect have not been finalized.

The HealthConnect trials used

locally-generated schemes for

identifying patients. The HealthConnect

Business Architecture version 1.9

indicates that ‘‘each consumer and their

EHR information will be uniquely

identified within HealthConnect by use

of a single unique identifier able to be

linked to any future National Health

Identifier’’ (HealthConnect Program

Office 2004a, 30). The National

E-Health Transition Authority’s major

initiatives for 2005–06 include ‘‘the

NEHTA Individual Healthcare Identifier

(IHI) Initiative [that] will establish an

identifier assigned to a person to enable

accurate identification of that individual

for healthcare purposes’’ (National

E-Health Transition Authority [hp]

Initiatives—major NEHTA initiatives

2005–06). According to NEHTA, ‘‘the

IHI will be assigned to all Australians

and will have cross recognition within

the entire healthcare sector’’ (National

E-Health Transition Authority [hp]

Initiatives—major NEHTA initiatives

2005–06). NEHTA also assumes that

‘‘an IHI system requires the retention

and maintenance of an accurate core set

of personal data for every individual

accessing Australian health services’’

(National E-Health Transition

Authority [hp] Initiatives—major

NEHTA initiatives 2005–06). The

NEHTA approach may include

leveraging existing elements of the

Medicare Australia (formerly Health

Insurance Commission)number for

developing the IHI and the necessary

associated personal information

(Australian National Audit Office

2004).

Uses for population health

monitoring and research

Several Australian government and

Australian government-commissioned

reports have emphasized the potential

contribution of shared EHRs to

population health monitoring and

research. In 2000, the National

Electronic Health Records Taskforce

pointed to evidence of the consumer

benefits of shared EHRs for population

and medical research (National

Electronic Health Records Taskforce

2000a). In 2001, the National Health

Information Advisory Council called for

‘‘a national system of electronically

stored health records, appropriately

constructed, [which] would permit

administrative, planning and research

information to be gathered in much

better ways to aid research and planning

purposes’’ (National Health Information

Advisory Council 2001, 111). In 2002,

the National Health Information

Management Group indicated that

‘‘further opportunities for enhancing

population health data, for instance in

disease surveillance, can be expected

from successful implementation of

HealthConnect’’ (National Health

Information Management Group 2003,

21). A comprehensive evaluation of

‘‘National Health Information

Management and Information and

Communications Technology Strategy’’,

prepared by the Boston Consulting

Group for the National Health

Information Group in 2004, emphasized

that ‘‘it is critical that new systems

being built to support clinical care. . .

take into account the needs of

population health research. For example,

longitudinal health records would be of

enormous benefit to researchers if they

were widespread, standardized and

complete. . . A complete electronic

health record could provide population

level data with detail sufficient to

support the most ambitious research’’

(Boston Consulting Group 2004, 74–5).

Finally, in Australia’s Health 2004, the

Australian Institute for Health and

Welfare emphasized the potential

benefits of HealthConnect for statistical

information, as well as the potential

limits on those benefits imposed by

voluntary participation in

HealthConnect, the nature of health

event summaries, and lack of

harmonizing of clinical and population

health data standards (Australian

Institute of Health and Welfare 2004,

350–1).

In the HealthConnect Business

Architecture version 1.9, primary users

of HealthConnect are defined as

healthcare consumers and providers.

Secondary users are defined as

‘‘researchers seeking information to

conduct research needed for improving

healthcare and its delivery’’; ‘‘planners

and managers . . . seeking information to

assist management decision making’’;

and ‘‘evaluators seeking information

directly related to monitoring the

effectiveness of HealthConnect’’

(HealthConnect Program Office 2004a,

38). Appropriate secondary uses of

HealthConnect electronic health records

include authorized national data

collections; clinical research; quality

improvement activities, including

clinical audits, health outcomes analysis,

adverse events monitoring, and product

recalls; and health policy development

(HealthConnect Program Office 2004a,

93–4). As described in the

HealthConnect Business Architecture

version 1.9, the National Data Store

would be the source for all secondary

uses, rather than the HealthConnect

Record Systems accessed by consumers
Series 2, No. 143 [ Page 27

and healthcare providers. Use of the

National Data Store for secondary uses

would ‘‘. . . generally be for de-identified

record analysis’’ or for the production of

aggregated reports (HealthConnect

Program Office 2004a, 41). Secondary

uses by researchers would follow approval

protocols already established by national

legislation (HealthConnect Program Office

2004a, 46).

The relationship between

HealthConnect and registries has not

been thoroughly specified. According to

the HealthConnect Business Architecture

version 1.9, ‘‘HealthConnect will

potentially support registers through the

provision of information such as

diagnosis and treatment information on

which specialist registries may be built’’

(HealthConnect Program Office 2004a,

30). Such practice-based registries may

or not be population-based, depending

upon the particular circumstances.

HealthConnect would ‘‘. . . provide a

mechanism for facilitating the

notification of notifiable events to

national health registers’’, but ‘‘it will

not seek to replace any registers or

become a registry service’’

(HealthConnect Program Office 2004a,

46). Finally, it is important to note that

utilization of HealthConnect for

population-based registries would be

predicated upon voluntary consumer

participation (HealthConnect Program

Office 2004a, 46).

The nexus between secondary uses

of HealthConnect electronic health

records and the National Data Store for

population health monitoring and

research, on the one hand, and patient

control over their EHRs, on the other

hand, is not entirely clear. What is clear

is that—according to the current

conceptualization of HealthConnect

—‘‘individuals will be able to control

the details that are included in their

HealthConnect records. . . [and] will

have the ability to determine what

information gets added to their record

and control who has access to it’’

(HealthConnect ] Q&As). What is not

entirely clear is whether HealthConnect

enrollees will have control over what

data are included in the National Data

Store, whether enrollees will be able

limit the data included in the National

Data Store and differentiate those data

from those included in their local or

regional Health Records Service, and

whether enrollees will provide

permission for de-identified and

identified secondary uses of their data in

the National Data Store.

Key issues relating to the use of

electronic health records for

population health monitoring and

research have been acknowledged by

the National E-Health Transition

Authority. Dr. Ian Reinecke, NEHTA’s

chief executive officer, has indicated

that ‘‘researchers will benefit from

access to standardized, longitudinal,

de-identified patient information’’ and

that aggregated information from

EHRs will be made available

(Reinecke 2005 Mar; Australian

Health Information Council 2005, 85).

NEHTA has identified researchers, as

well as administrators and funders, as

secondary users of electronic health

records. See Figure 4.4.

Canada

Summary

Canada Health Infoway (Infoway)

was funded by the government of

Canada in 2002 to develop the national

strategy for electronic health records and

the supporting national health

information infrastructure. Infoway is an

independent not-for-profit corporation,

and is accountable to the fourteen

federal, provincial, and territorial

governments. Canada’s national strategy

is evolving, with the initial strategy

published by Infoway in July 2003 as

the EHRS Blueprint: An Interoperable

EHR Framework, Version 1.0, and a

Version 2.0 slated for publication in

February 2006. Canada’s goal is to have

electronic health records covering 50%

of Canada by 2009 and all of Canada by

2020. The national strategy includes ‘‘a

network of connected EHR solutions

(EHRS), each covering a defined

geography, [with the patient. . .] seen as

being in one cross-jurisdictional EHR’’

(Canada Health Infoway 2005 Dec, 59).

The Canadian electronic health record

will contain ‘‘patient-centric data, womb

to tomb, [with] encounter based

information’’ (Canada Health Infoway

2005 Dec, 59). Although the original

Infoway business plan did not include

population health monitoring as one of

its investment programs, in 2004

Infoway was funded to design a

pan-Canadian public health surveillance

system for communicable diseases as

part of the national strategy for

electronic health records.

Locus of national

responsibilities

The locus of responsibility for the

development of a national agenda and

strategies for electronic health records is

Canada Health Infoway Inc. (Infoway).

Infoway was established in 2002 as an

independent not-for-profit corporation

and is accountable to the fourteen

federal, provincial, and territorial

governments (Health Canada [hp]

eHealth Resource Centre, Canada’s

Health Infostructure, Chronology;

MacLean 2004). Infoway has been

provided with funding of approximately

U.S. $1.044 billion from the federal

government (Giokas 2005 Jun 28, 5).

Infoway’s mission is ‘‘to foster and

accelerate the development and adoption

of electronic health information systems

with compatible standards and

communications technologies on a

pan-Canadian basis. . . [and] to build

on existing initiatives and pursue

collaborative relationships in pursuit

of its mission’’ (Hodge 2004). Infoway

‘‘provides leadership in setting the

strategic direction and standards for

EHR deployment across Canada’’ and

Infoway acts as a ‘‘strategic investor’’

in furthering its mission (Hodge

2004).

The creation of Canada Health

Infoway reflected the

recommendations of several

pan-Canadian advisory bodies dating

to the mid-1990s. The Advisory

Council on Health Infostructure was

established by the national Minister of

Health in 1997, in order to develop a

‘‘Canadian vision of a health

information system on the information

highway[,] identify. . . the essential

needs it should meet[, and]

generat[e]. . . a federal action agenda

to implement the most vital

components of the system’’ (Health
Page 28 [ Series 2, No. 143

Figure 4.4. Initiatives of Australia’s National E-Health Transition Authority

SOURCE: Reinecke I (2005 Jun 21). National E-Health Agenda. Presented at DSTC electronic health breakfast, Canberra (AU).

Canada [hp], eHealth Resource Centre,

History). In its 1999 final report, the

Advisory Council recommended that

‘‘the federal Minister of Health should

work with his provincial and territorial

counterparts to improve patient care

through the creation of provincial and

territorial person-based, electronic

health record systems. . . [which]

would make accessible—on a

need-to-know basis and under the

control of patients—all relevant

information about their past medical

histories’’ (Advisory Council on

Health Infostructure 1999, 9). Between

2000 and 2002, Health Canada, the

Federal/Provincial/Territorial

Committee on Health Infostructure,

and the national Kirby and Romanow

Commissions all argued for the

development of a pan-Canadian

electronic health record system

(Commission on the Future of

Healthcare in Canada 2002, 76;

Advisory Committee on Health

Infostructure 2001b; Siman 2000, 33;

Standing Senate Committee on Social

Affairs, Science and Technology 2002,

177, 180). In its January 2005 report,

the Health Council of Canada, founded

by the government of Canada as an

independent non-profit agency in

response to the Kirby and Romanow

Commissions’ reports, re-emphasized

‘‘the value of electronic health

records. . . as tools to improve access,

quality and comprehensiveness of care

[and that they] should be reinforced so

that the public clearly understands the

benefits and demands their

introduction’’ (Health Council of

Canada 2005 Jan, 41).

Current status and plans

Canada Health Infoway’s

overarching ‘‘plan is to have

interoperable electronic health records in

place across 50 percent of Canada (by

population) by the end of 2009’’, and

across 100% of Canada’s population by

2020 (Alvarez 2004; Hodge 2004). In its

role as strategic investor, Infoway funds

nine strategic investment programs,

including interoperable electronic health

records (U.S. $152 million); client,

provider, and location registries (U.S.

$117 million); and public health

surveillance systems (U.S. $87 million)

(Giokas 2005 Jun 28, 9).3

Canada Health Infoway defined its

initial national strategy for electronic

health records and what Infoway calls

the electronic health record infostructure

in its EHRS Blueprint: An Interoperable

EHR Framework, Version 1.0, published

in July 2003 (Canada Health Infoway

2003). Infoway maintains that ‘‘the real

value of the EHRS Blueprint is having

all Jurisdictions [throughout Canada]

actively reusing its components for their

strategy, design and implementation of

an interoperable EHR’’ (Canada Health

Infoway 2005 Jan, 13). Infoway has

been undertaking an EHRS Blueprint

Evolution Project that will culminate in

the publication of the Blueprint, Version

2.0 in February 2006 (Canada Health

Infoway 2005 Fall, 9). As discussed

below, preliminary materials available

3

As indicated in Chapter One, the definition of

electronic health record employed in this report

includes interoperability. Hence, Canada Health

Infoway’s ‘‘interoperable electronic health

records’’ will be referred to here solely as

‘‘electronic health records.’’
Series 2, No. 143 [ Page 29

from Infoway indicate that substantial

changes will occur from Blueprint,

Version 1.0 to Version 2.0 in the

national strategy for electronic health

records, especially relating to uses of

electronic health records for population

health monitoring.

Development of electronic health

records is progressing at the provincial

level, although the stage of development

varies from province to province

(Sweete 2004). Alberta is developing a

province-wide electronic health record

that would initially provide access to

patient demographics, pharmacy, and

laboratory data (Alberta Health and

Wellness 2004; Alberta Health and

Wellness [hp] Alberta Wellnet; Binns

2004; Morgan 2004, 9–21; Zeidenberg

2004). Capital Health, a Regional Health

Authority in Alberta, has rolled out

netCARE, a region-wide electronic

health record that will link to the

provincial Wellnet and will include

hospital discharge summaries and

radiology and operating room reports

(Freeman 2004). British Columbia is

evaluating the development of

province-wide electronic medical

summaries (Protti 2004; Vancouver

Island Health Authority 2004).

Newfoundland/Labrador is developing a

province-wide patient registry with

linkages to diagnostic images as

necessary (Canada Health Infoway No

Date a, 13).

Electronic health record

definition

As defined in Infoway’s EHRS

Blueprint, Version 1.0, the electronic

health record is ‘‘a life-long longitudinal

record of clinical data. . . it will

accumulate and keep clinical

information about an individual health

record from womb to tomb.’’ The

electronic health record ‘‘provides each

individual in Canada with a secure and

private lifetime record of his or her key

health history and care within the health

system. The record is available

electronically to healthcare providers

and the individual anywhere, anytime in

support of high quality care’’. It will

contain ‘‘summary level information

about healthcare encounters for each

patient/person and often also the

detailed clinical data replicated from the

point of service applications.’’ However,

the ‘‘EHR is not an operational data

store and is never the source for newly

created clinical data.’’ The electronic

health record ‘‘is not one system but

rather an interoperable network of

peer-to-peer related infostructures which

enables sharing of clinical data across

organizations and providers involved in

the circle for any patient/person’’

(Canada Health Infoway 2003, 13, 29,

35, 40, 164).

National health information

infrastructure elements related

to electronic health records

Infoway’s national strategy for

electronic health records is evolving

from the 2003 publication of the EHRS

Blueprint, Version 1.0 to the February

2006 publication of Version 2.0. As

described in the EHRS Blueprint,

Version 1.0, Infoway’s electronic health

record solution includes crossjurisdictional, jurisdictional (provinces,

territories, and sub-provincial and

sub—territorial Regional Health

Authorities), and point of service

elements (see Figure 4.5). Crossjurisdictional services would be

supported by a health information access

layer (HIAL), enabling a pan-Canadian

electronic health record ‘‘service’’

(Canada Health Infoway 2005 Dec, 8).

Implementation of the electronic health

record infostructure may vary at the

jurisdictional level, depending upon

provincial and jurisdictional size and

other considerations (Canada Health

Infoway 2005 Dec). ‘‘Full featured’’

implementation of an electronic health

record infostructure will include:

registries data and services (client,

provider, location, and terminology

registries); ancillary data and services

(infectious disease outbreak management

and public health surveillance

reporting); electronic health record data

and services (shared health record, and

drug information, diagnostic imaging,

and laboratory domain repositories that

are operational data stores); a data

warehouse; longitudinal record services

(business rules and message structures);

and the health information access layer,

which provides access to the registries,

ancillary data and services, and

electronic health data and services for

applications at points of service, such as

laboratories, home care, and family

physicians. Point of service elements

will include systems for public health

services, systems used by individual

providers (pharmacy, radiology,

laboratory, hospital, physician office,

and so forth), and an electronic health

record viewer through which the

provider can access the electronic health

record data (Canada Health Infoway No

Date b, 116). See Figure 4.6. Reflecting

the emphasis on public health

surveillance added through the funding

of Infoway to develop public health

surveillance systems in March 2004,

Blueprint, Version 2.0 will apparently

more thoroughly explore and define the

public health surveillance delivery

systems within the national strategy for

electronic health records (Canada Health

Infoway No Date b; Canada Health

Infoway 2005 May; Canada Health

Infoway 2005 Dec). These issues are

discussed below in Uses for population

health monitoring and research.

Electronic health record storage

As currently conceived in Canada’s

evolving national strategy for electronic

health records, data storage may vary

somewhat among jurisdictions of

different sizes. In the ‘‘full featured’’

electronic health record infostructure,

data storage at the jurisdictional level

would include a shared health record,

which was described in Infoway’s EHRS

Blueprint, Version 1.0 as the electronic

health record data base ‘‘contain[ing]

client-centric longitudinal data. . .

belonging to multiple clinical domains’’

(Canada Health Infoway 2003, 48, 13;

Canada Health Infoway No Date b,

116). Additionally, domain repositories

will ‘‘store and provide access to

specific clinical data, typically at a

jurisdictional level that is not replicated

in the EHR’’ and ‘‘will typically be the

operational data stores for jurisdictionallevel domain functions, such as drug

prescribing and dispensing’’ (Canada

Health Infoway 2003, 40). Client

identifying information will be stored in

the client registry. Finally, a data

warehouse with health information may
Page 30 [ Series 2, No. 143

Figure 4.5. Key elements of Canada’s Electronic Health Record Solution Conceptual System Architecture model

SOURCE: Canada Health Infoway, Inc. (2003 Jul). EHRS Blueprint: An Interoperable Framework version 1.0, Montreal QC (CA): Canada Health Infoway, Inc; 39.

also exist at the jurisdictional level

(Canada Health Infoway No Date b,

116). Additional operational data would

also be stored in point of service

systems maintained by individual

healthcare providers.

Patient confidentiality and

participation

A basic tenet of the Romanow

Commission was that ‘‘individual

Canadians should have ownership over

their personal health information, ready

access to their personal health records,

[and] clear protection of the privacy of

their health records’’ (Commission on

the Future of Healthcare in Canada

2002, 76). In keeping with the

Romanow Commission’s finding, a key

feature of Infoway’s national strategy

for electronic health records is that

‘‘patients have the right to determine the

purpose, when and who can access their

PHI [personal health information]’’

(Ratajczak 2005 Nov, 11). However,

given the nature of the Canadian

governmental system, the legal specifics

of patient consent and participation in

electronic health records will vary

among the provinces and territories

(Canada Health Infoway 2005 Jun,

61–62). Canada Health Infoway’s

electronic health record infostructure

will enable electronic health records to

reflect jurisdictional variation in the

‘‘statutory right of an individual to

restrict the use or disclosure of his or

her PHI’’ [personal health information],

known in Canadian parlance as a

‘‘lockbox’’ (Canada Health Infoway

2005 Jun, 63). According to the EHRS

Blueprint, Version 1.0 ‘‘at the very least,

consent will be specific to a particular

encounter with a specific healthcare

provider’’ (Canada Health Infoway

2003, 31).4

Since the publication of the EHRS

Blueprint, Version 1.0 in July 2003,

Infoway has specified in detail consent

and participation issues relating to

electronic health records (Canada

Health Infoway 2005 Jun; Ratajczak

2005 Nov). The electronic health record

infostructure will contain ten privacy

and security services, including a

‘‘Consent Directives Management

4

The ‘‘Pan-Canadian health information privacy

and confidentiality framework’’, developed by the

Federal/Provincial/Territorial Conference of

Deputy Ministers of Health, recommends that

‘‘personal health information may be disclosed for

the purpose of public health surveillance without

the individual’s consent subject to overriding

constraints’’, which would affect jurisdictional

implication of any lockbox (Health Canada 2005

Jan 27).
Series 2, No. 143 [ Page 31

Figure 4.6. Canada’s full featured Electronic Health Record Jurisdictional Infostructure

SOURCE: Canada Health Inforway (No Date b). Infoway architecture update. Montreal, QC (CA): Canada Health Infoway Inc. Available from: http://forums.infowayinforoute.ca/webx?50@424.y3SsaHXmarA.3@.eec6995/2 [cited 2006 Jan 18]: 116.

Service that translates privacy

requirements arising from sources such

as legislation, policies, and individuals’

specific consent directives, and applies

these requirements’’ (Canada Health

Infoway 2005 Jun, 26). An additional

privacy and security service will be an

‘‘Anonymisation Service.’’ The

Anonymisation Service will anonymize

data by removing all personal identifiers

for secondary uses such as healthcare

research and administration (Canada

Health Infoway 2005 Jun, 27). It will

also pseudonymize data, enabling

person-specific linkage of personspecific data through ‘‘a meaningless

but unique identifier’’ for approved

researchers and some public health

surveillance purposes (Canada Health

Infoway 2005 Jun, 78).

Canada Health Infoway’s EHRS

Blueprint, Version 1.0 does not address

healthcare provider consent issues

relating to the electronic health record.

Resolution of these issues will probably

be jurisdiction and perhaps subjurisdiction (Regional Health

Authority)-specific, and will also depend

upon the particular role and

organizational locus of the individual

healthcare provider.

Patient identification

Canada has neither a unique

national identifier nor a unique national

health identifier (Advisory Council on

Health Infostructure 1999, 3–6;

Canadian Institute for Health

Information 2000, 9). The Advisory

Council on Health Infostructure ‘‘is

strongly opposed to multipurpose

identifiers and believes that they can

lead to serious invasions of privacy’’,

and a national workshop on recipient

identifiers and registries held by the

Canadian Institute for Health

Information (CIHI) concluded that ‘‘a

single unique lifetime healthcare

recipient identifier is not required at a

national level’’ (Advisory Council on

Health Infostructure 1999, 3–6;

Canadian Institute for Health

Information 2001a, 7). A CIHI study

found that ‘‘a wide variety of unique

identifiers were found to be in use in

the Canadian healthcare system with

varying levels of sophistication’’, and

the CIHI workshop concluded that

jurisdictionally unique health identifiers

are necessary (Canadian Institute for

Health Information 2000, 9; Canadian

Institute for Health Information 2001b,

1). In some provinces, provincial health

numbers could be employed or adapted

as unique health identifiers for
Page 32 [ Series 2, No. 143

electronic health records (Ontario

Hospital eHealth Council 2003, 3).

Canada Health Infoway has focused

on client registries as its solution to

unique identification of patients for

electronic health record purposes.

Infoway defines a client registry as

‘‘like a ‘white pages’ phone book, a

directory of people being treated’’

Canada Health Infoway 2004a, 11). The

client registry ‘‘uniquely identifies

individuals across a large segment of a

regional healthcare continuum, typically

an entire jurisdiction’’ and will serve as

a ‘‘single ‘source of truth’ in each

jurisdiction’’ (Canada Health Infoway

2003, 41; Hodge 2004). As defined by

Infoway in 2005, the client registries

will include a range of identifying data

about all people who have received

healthcare in a given jurisdiction: static

‘‘natural person’’ identifying information

(such as birthdate), dynamic natural

person identifying information (such as

address and telephone number), and

static and dynamic ‘‘artificial person’’

identifying information (such as various

health identifiers used by individual

providers) (Canada Health Infoway 2005

Jun, 22; Canada Health Infoway 2005

Dec, 23). Jurisdictional client registries

will recognize that individual clients

may have multiple health identifier

numbers even within a single

jurisdiction, and will provide

identification services to enable unique

identification of individuals for

electronic health record purposes despite

the existence of those multiple

identification numbers (Canada Health

Infoway 2003, 37). As currently

conceptualized by Infoway, each

jurisdictional client registry will

generate unique electronic health record

infostructure client identifiers (ECID),

which will be ‘‘a meaningless but

unique number that is only known or

used within the jurisdictional

implementation of the EHRi’’ [electronic

health record infostructure] (Canada

Health Infoway 2005 Jun, 26). In

addition to the ECID, another

meaningless but unique number known

as a federated identifier (FID) will be

developed for those individuals who

receive care within more than one

jurisdiction, enabling the sharing of data

without disclosure of the ECID (Canada

Health Infoway 2005 Jun, 26–27).

Infoway and individual provinces

are investing in developing client

registries. In March 2005, Infoway

announced new investments of U.S.

$1,566,000 in four new projects,

including a client registry project and a

‘‘client registry toolkit’’ to facilitate

implementation of jurisdictional client

registries (Canada Health Infoway,

2005b; 2005c). Infoway also

collaborated with Newfoundland and

Labrador’s Centre for Health

Information in the development of its

provincial client registry, and with the

Capital Health Regional Health

Authority in Edmonton in the

development of its netCARE client

registry (Canada Health Infoway 2005c).

Other jurisdictional client registry efforts

underway include a common client

registry for Prince Edward Island and

Alberta’s Wellnet (Miller No Date; Ryan

2002; 2003).

Uses for population health

monitoring and research

In 1999, Health Canada instituted a

National Health Surveillance

Infostructure program, with federal,

provincial and territorial partners

(Health Canada 1999). In its 2001

recommendations regarding the National

Health Surveillance Infostructure, the

Advisory Committee on Health

Infostructure emphasized ‘‘national

standards needed to create the core data

set for the electronic health record

include the needs of preventive public

health’’ (Advisory Committee on Health

Infostructure 2001a, 8). In 2002, both

the Romanow Commission and an

invitational workshop convened by

Health Canada pointed to the potential

uses of aggregated, de-identified EHRs

for research and policy-making purposes

(Commission on the Future of

Healthcare in Canada 2002, 79;

Deerfield Group 2002, 8). Health

Canada has acknowledged EHRs as

‘‘contribut[ing] significantly to public

outcomes’’ and as ‘‘perhaps the ultimate

solution to enhancing chronic disease

surveillance’’ (Goddard et al. 2004, 114;

Health Canada 2003). In its high level

model for public health and healthcare,

published as part of the EHRS Blueprint,

Version 1.0, Health Canada identified

the electronic health record as ‘‘the

integrating vehicle that allows data and

information to flow from health

sub-system to health sub-system’’,

including the public health system

(Canada Health Infoway 2003, 139).

The public health community has also

recognized the ‘‘use of the fully

implemented EHR infrastructure as the

primary feed for person-level clinical

data to the data analysis environment’’

as a ‘‘could do’’ requirement for the

conceptual architecture for

communicable disease surveillance

(Canada Health Infoway 2004b, 6).

Although the EHRS Blueprint,

Version 1.0 identified research and

disease surveillance as among six

secondary uses of the electronic health

record, the original Infoway business

plan did not include any form of

population health monitoring as a

strategic investment program (Canada

Health Infoway 2003, 7; Goveia 2004,

48). However, in the wake of the SARS

epidemic, Infoway was funded in 2004

to add public health surveillance

systems as one of its nine strategic

investment programs (Canada Health

Infoway [hp], What we do, public health

surveillance).

Canada Health Infoway’s public

health surveillance ‘‘investment will

focus on a pan-Canadian approach to

health surveillance and where

appropriate integrate it into the

electronic health record architecture and

infostructure’’ (Beasley, Danderfer, and

Bornstein 2005 May). The public health

surveillance program will focus on

infectious diseases, and will include

surveillance, outbreak notification

(‘‘health alert management’’), outbreak

management, case management,

reporting, and immunization

management (Beasley, Danderfer, and

Bornstein 2005 May). As currently

conceptualized, each electronic health

record jurisdictional infostructure will

include the ancillary data services of

outbreak management and public health

surveillance reporting; electronic health

record data services with a shared health

record supporting case management and

an immunization registry; the health

information access layer (HIAL)

providing outbreak notification services;
Series 2, No. 143 [ Page 33

a data warehouse providing public

health surveillance data warehouse

services; and a public health

surveillance portal enabling point-ofservice access to operational data

(Canada Health Infoway 2005 Dec).5

New Zealand

Summary

The New Zealand Ministry of

Health has set the national strategy for

electronic health records and the

supporting national health information

infrastructure within the overall

framework of national population health

and health system strategies. New

Zealand health information and health

information technology strategies have

been integrated into the larger

population health and health system

strategies since the publication in 2000

of The New Zealand Health Strategy

and in 2001 of From Strategy to Reality

(Ministry of Health 2000 Dec; Ministry

of Health 2001 Oct). Health Information

Strategy for New Zealand, published in

August 2005, constitutes the most recent

national strategic statement regarding

electronic health records (Ministry of

Health 2005 Aug). New Zealand has

rejected ‘‘a single integrated record

[. . . as] neither workable nor

practicable’’ (Ministry of Health 2005

Aug, 10). Instead, New Zealand has

adopted what it describes as a

distributed electronic health record that

consists of: local systems for direct

clinical care, which are owned and

operated by healthcare service

providers and may vary among

providers; regional systems for

coordination of care and decisionmaking about service delivery; and

national systems, which include

5

Infoway officials have ‘‘acknowledged that

synchronization between the proposed public

health surveillance system and EHRs is a

long-term prospect’’: ‘‘What will happen is that

this communicable disease surveillance effort will

unfortunately have to be fed mostly by the

long-suffering staff at public health agencies that

have to key enter a lot of data. . . In the near term,

our job is to design and build surveillance systems

so that they’ll have the hooks built into them to be

able to accept input from EHR, but realizing that

EHR systems are not going to be universal’’

(Schick 2005).

individual health event- and health

topic-specific data collections. Data

held in local, regional, and national

systems rely on the National Health

Index number, which enables linkage

at the individual patient level when

allowable.

Locus of national

responsibilities

The locus of national

responsibilities for development of

national health information infrastructure

strategies lies within the Ministry of

Health and its New Zealand Health

Information Service.

Current status and plans

International data indicate that

Internet usage in New Zealand is higher

than in other surveyed countries, with

70% of respondents having used the

Internet in the last month and 40%

having dealt with New Zealand

government through the Internet (Health

e-News 2003 Mar 4). Almost 100% of

general practices employ practice

management software, with most using

it for maintaining cervical screening,

diabetes, breast screening, asthma, and

blood pressure registries (Didham,

Dovey, and Barker 2005, 8, 11). Over

90% of general practices utilize

electronic messaging (Didham, Dovey,

and Barker 2005, 8, 11). The Deputy

Director-General of the Ministry of

Health has estimated that ‘‘every

hospital—‘100%’—uses EHRs’’

(O’Connor 2004, 16).

The New Zealand Ministry of

Health has repeatedly emphasized the

development of ‘‘a nationally coherent

and consistent approach to a health

information infrastructure, based on

improving access to information and the

consolidation of appropriate standards’’

(Ministry of Health 2000 Dec, 29). New

Zealand’s national approach starts with

an overall health strategy, addressing

health systems issues within the context

of population health and setting goals

for both simultaneously. The 2001

Ministry of health information

management and technology plan,

reporting on the results of the Working

to Add Value through E-information

(WAVE) project, pointed out that

‘‘information systems do not exist in

isolation from policy, programmes, or

political imperatives’’ (Ministry of

Health 2001 Oct, 9). The top ten

priorities emerging from the WAVE

project included a mix of population

health information content priorities

(collection of reliable ethnicity data and

primary care information), information

technology priorities (cleaning up

messaging standards), and population

health and health system priorities tied

to information technology (making

integrated care work by developing

standards for data exchange, security,

and network infrastructure) (Ministry of

Health 2001 Oct). The Ministry of

Health’s 2005 report, Health

Information Strategy for New Zealand,

similarly stresses the link between

national health strategies, national health

information strategies, and regional and

local information systems strategic plans

(Ministry of Health 2005 Aug). See

Figure 4.7. The Health Information

Strategy for New Zealand specifies

twelve ‘‘action zones’’ that provide a

focus for implementation planning for

the next three to five years; these action

zones also include a mix of population

health information content priorities

(national outpatient and primary care

data collections), information technology

priorities (national network

implementation, ePharmacy, eLabs), and

population health priorities (Ministry of

Health 2005 Aug, x).

The Health Information Strategy for

New Zealand points out that ‘‘as a small

nation, New Zealand does not have the

financial resources nor the time to

approach information system challenges

with a grand plan from the top down.

Conversely, when it comes to making

investments in complex information

systems, we cannot afford to re-invent

the wheel and have everybody decide to

solve problems in their own unique

way’’ (Ministry of Health 2005 Aug,

10). As a result, the Ministry of Health

has chosen a limited set of national

health information infrastructure targets

for national investment, while adopting

an entrepreneurial approach for others

(O’Connor 2004). For example, the

Ministry of Health ‘‘deliberately focuses

on enabling better use of information
Page 34 [ Series 2, No. 143

Figure 4.7. New Zealand’s linkage between health strategies and information strategies

SOURCE: Ministry of Health (2005 Aug). Health Information Strategy for New Zealand. Wellington (NZ): Ministry of Health; 6.

between service providers across the

New Zealand health and disability

sector. Better information usage within

any one organisation is supported by

HIS-NZ [Health Information Strategy

for New Zealand] setting priorities and

providing guidelines. . . Each

organisation, however, needs to take

responsibility for their own strategic

systems plans to guide the development

of solutions to their unique business

challenges’’ (Ministry of Health 2005

Aug, 17).

‘‘Historically, there has been no

sector-wide approach to developing

health information systems in New

Zealand’’ (Kerr 2004). However, New

Zealand’s twenty-one population-based

District Health Boards, which have

‘‘overall responsibility to assessing the

health and disability needs of

communities in their regions, and

managing resources and service delivery

to best meet those needs’’, have been

required to follow a common

methodology in identifying strategic

health information technology needs

and to utilize a common format for

Information Systems Strategic Plans

(Jackson 2004 Sep 8; Ministry of

Health 2001 Feb, 4; Ministry of

Health 2003 Dec-b, 128). Shared

information technology service

agreements also exist among the

District Health Boards (Kerr 2004;

Ministry of Health 2005).

The Ministry of Health adopts an

incremental approach to building the

national health information

infrastructure, as expressed by the then

General Manager of Information

Management and Technology of

Statistics New Zealand: ‘‘we cannot

afford to make large mistakes. . . so let’s

make lots of small ones:-)’’ (Osborne

2002 Aug, slide 19). The Ministry of

Health and the New Zealand Health

Information Service emphasizes their

commitment to ‘‘having a business plan

that can be swallowed in small bits’’ and

‘‘accept[ing] that some of the anomalies

in the [health] system—such as

fragmentation—won’t go away easily. . .

it’s better to work within this framework

rather than try and change it in the short

term’’ (Health e-News 2002 Jun, 8). The

incremental approach to developing

New Zealand’s national health

information infrastructure is reflected in

its information management building

blocks approach, with an emphasis on

‘‘getting the basics right’’ (Osborne

2002, slide 7). The individual building

blocks will be described in Electronic

health records elements below (Ministry

of Health 2005 Mar).
Series 2, No. 143 [ Page 35

Electronic health record

definition

New Zealand’s approach to defining

the electronic health record reflects the

Ministry of Health’s ‘‘small bits’’

approach. The 2001 WAVE report

observed that ‘‘feedback shows the

preferred option [for implementing

electronic health records] is an

incremental approach, as it would

minimise disruption, help stakeholder

acceptance in the change management

process, improve accountability for

future proofing, and cost less.

Furthermore, an incremental approach

does appear to be happening, although it

lacks a national approach’’ (Ministry of

Health 2001 Oct, 28). New Zealand has

rejected what some New Zealand

information system managers describe

as the ‘‘holy grail’’ of an electronic

health record that ‘‘holds all medical

information about a patient, is

contributed to by every clinician

involved in the patient’s care, and is

deployed for every patient. For a

clinician to access the record, they must

go onto the internet, enter a patient’s ID

and voila—everything about that patient

is instantly available’’ (Leech 2004

Mar). The Ministry of Health’s emphasis

is on the collection, use, and retention

of patient information close to the actual

site (the ‘‘coal face’’) of patient care

(Cressey 2002 Aug, slide 20). The

Health Information Strategy for New

Zealand thus ‘‘has discounted a single

national repository EHR for all of an

individual’s identifiable health

information’’ (Ministry of Health 2005

Aug, 12). Instead, the Ministry of

Health ‘‘envisions an electronic health

record distributed at local, regional and

national levels, with the richest and

most detailed information about a

consumer kept locally’’ (Ministry of

Health 2005 Aug, 12).

National health information

infrastructure elements related

to electronic health records

The development of a distributed

electronic health record will be

facilitated by the following elements,

some already implemented and some

currently planned:

+ National Health Index (NHI), which

includes patient-specific

demographic and other information

associated with the National Health

Index number (New Zealand Health

Information Service [hp] National

Health Index, NHI and MWS Fact

Sheet). The National Health Index

and the National Health Index

number will be discussed further

below in Patient identification.

+ Medical Warning System, which is

linked to the National Health Index

and ‘‘designed to warn health and

disability support services of any

known risk factors that may be

important when making clinical

decisions about individual patient

care’’, and contains medical

warnings (allergies, adverse

reactions, drug sensitivities), medical

alerts (significant medical

conditions), and hospital event

summaries (New Zealand Health

Information Service [hp] National

Health Index, NHI and MWS fact

sheet).

+ National Minimum Data Set for

hospital events, which is linked to

the Medical Warning System via the

National Health Index. The National

Minimum Data Set for hospital

events eventually will be

supplemented by additional new

National Minimum Data Sets

(Ministry of Health 2005 Aug, 21,

25–26, 65; New Zealand Health

Information Service [hp] Data &

Services, Guide to NZHIS national

collections: National Minimum

Dataset (hospital events)).

+ Electronic connectivity within the

health sector through a ‘‘national

network strategy’’, relying on secure

broadband (Ministry of Health 2005

Aug, 22–23, 32–35). Connectivity is

now primarily facilitated by

HealthLink’s virtual private network,

which provides electronic data

interchange for 75% of health sector

organizations and 95% of GPs

(health eLink 2004 Aug; Protti and

Graham 2003, 29).

+ Health Information Standards

Organisation, an independent body

established in 2003 to coordinate the

development and implementation of

standards (Health e-News 2004 Jul;

Ministry of Health 2005 Aug,

43–44).

+ ePharmacy, eLabs, and the Health

Provider Index, all of which are

included in the New Zealand Health

Information Strategy as essential

‘‘action zones’’ for implementation

within a five year time frame

(Ministry of Health 2005 Aug,

24–25).

Electronic health records

storage

As described in the Health

Information Strategy for New Zealand,

the distributed electronic health record

approach includes three levels of

systems and apparently three levels of

data retention as well. See Figure 4.8.

The first level of data storage is

‘‘local systems [that] support the

delivery of personalised care ‘at the coal

face’ by service providers. These

systems have the most amount of detail

and carry rich data about a consumer

and any given interaction’’ (Ministry of

Health 2005 Aug, 12). Under the

distributed electronic health record

model, ‘‘these systems are owned and

driven by the individual service

providers’’ (Ministry of Health 2005

Aug, 12). These local systems are

‘diverse’ applications [that] are typically

built for a specific purpose and often

require local development of highly

innovative applications’’ (Ministry of

Health 2005 Aug, 37).

The second level of data storage is

‘‘regional systems [that] consolidate

specific clinical data at a regional level

for the co-ordination of care and

decision making around service delivery.

Typically they provide key event

summaries that abstract relevant

information from consumer encounters’’

(Ministry of Health 2005 Aug, 12). In

contrast to the local systems featuring

diverse applications, the regional

‘‘systems are owned and driven by

regional agencies such as DHBs [district

health boards], shared support agencies

and PHOs [primary health

organisations]’’ (Ministry of Health 2005

Aug, 12). Regional systems feature

‘common’ applications, supporting

clusters of organisations operating with

standard business processes [which. . .]
Page 36 [ Series 2, No. 143

Figure 4.8. New Zealand’s distributed Electronic Health Records model

SOURCE: Ministry of Health (2005 Aug). Health Information Strategy for New Zealand. Wellington (NZ): Ministry of Health; 12.

should be consistent with national

directions’’ (Ministry of Health 2005

Aug, 37).

The third level of data storage is

national systems (‘‘anchors’’) that

‘‘provide shared data and consistent

business processes to the health and

disability sector of New Zealand. They

provide reference points and ‘anchors’

for nationally significant information

and events and support a number of

clinical safeguards such as the Medical

Warnings System (MWS)’’ (Ministry of

Health 2005 Aug, 13). Systems

operating at the national level are ‘core’

applications [that] can only function

well if they are singular and are best

managed nationally’’ (Ministry of Health

2005 Aug, 37). These national ‘‘systems

are owned and operated by national

agencies such as the Ministry of Health’’

(Ministry of Health 2005 Aug, 13).

Examples of national data retention

include the current National Health Index

and Medical Warnings System, the current

National Minimum Data Set (inpatient

discharges) together with its planned

enhancements, and planned national

collections for outpatient or community

care and primary care (Ministry of Health

2005 Aug, 25–28, 82–85).

Patient confidentiality and

participation

Issues relating to patient consent to

collection and use of data included in

electronic health records would be

governed by the New Zealand Privacy

Act of 1993 and the Health Information

Privacy Code of 1994, as amended most

recently in July 2000 (O’Connor 2004;

Stewart 2004). Neither the Privacy Act,

nor the Health Information Privacy

Code, nor the Health Information

Strategy for New Zealand directly

address or resolve issues relating to

e-consent. The Health Information

Privacy Code stipulates that health

agencies must take reasonable steps to

ensure that individuals are informed of

data collection about them and the

intended recipients of the data, provided

access to the data, entitled to request

correction of the data, and that use of

the collected data for any other than the

original purpose is subject to the

individual’s authorization (Office of the

Privacy Commissioner 2000 Jun, 8,

10–11, 13; Office of the Privacy

Commissioner 2002). The Health

Information Privacy Code permits

disclosure of health data, without the

individual’s consent, if the data are not

identified and are used for approved

research or statistical purposes, or are

identified and are needed to avert a

public health or safety threat (Office of

the Privacy Commissioner 2000 Jun,

14–15). The Office of the Privacy

Commissioner has addressed some

issues related to e-consent, such as

concerns emerging from patient request

for destruction of medical records,

concerns about privacy and centralized

health data bases, event summaries, and

integrated care (Office of the Privacy

Commissioner 1998 Apr, 1998 May,

1998 Aug, 1998 Nov–Dec, July–August

2001 Jul–Aug,

The Health Information Strategy for

New Zealand does not directly address

provider participation in electronic

health records. Policies regarding
Series 2, No. 143 [ Page 37

provider participation would probably

occur at the District Health Board or

Primary Health Organization levels.

Patient identification

The National Health Index number

is an alphanumeric seven digit code

intended to serve as a unique identifier

‘‘assigned to each person using health

and disability support services’’ (New

Zealand Health Information Service [hp]

National Health Index, NHI Frequently

Asked Questions). The New Zealand

Health Information Service estimates

that ‘‘about 95% of New Zealanders

have their own unique NHI number’’

(New Zealand Health Information

Service [hp] National Health Index, NHI

Frequently Asked Questions). The

National Health Index ‘‘is an index of

information associated with that unique

number’’, and includes name, maiden

name, date of birth, sex, residency

status, ethnicity, and any medical

warnings.

The National Health Index number

can be used only by authorized users,

such as health services providers,

screening programs, and public health

programs. Authorized users can only

employ the National Health Index

number for stipulated purposes,

including obtaining information from

clinical information systems, and

accessing the Medical Warnings System

and the National Immunization Register.

Additionally, the Ministry of Health uses

an encrypted National Health Index

number for unique identification of

individuals on central data bases for

statistical purposes (New Zealand Health

Information Service [hp] National

Health Index, NHI Frequently Asked

Questions).

In its 2001 WAVE report, the

Ministry of Health identified the need to

‘‘fix up the National Health Index

(NHI)—allow primary provider access,

improve ethnicity data’’ (Ministry of

Health 2001 Oct). The WAVE report

recommendation has been implemented

through a 2003–2004 effort to

de-duplicate the National Health Index

through ensuring that each National

Health Index number pertains to only

one New Zealander and that each New

Zealander has only one National Health

Index number (New Zealand Health

Information Service [hp] National

Health Index, NHI Frequently Asked

Questions). Implementation also

occurred through the development of the

NHI On-line Access for Health

(NOAH), a Web-based application that

provides access to the NHI and the

Medical Warnings System for health

services providers, regardless of their

particular electronic Patient Management

System (Delany 2002, slides 14–15;

Health e-News 2004 Jul). Despite these

efforts, the 2005 Health Information

Strategy for New Zealand, which

identified the National Health Index as

one of the national anchor applications,

pointed out that ‘‘while it has been

available for a number of years, it has

been implemented comprehensively only

within secondary care, and in more

recent years by organised general

practice for pharmacy and laboratory

referrals and in enrolment; it will need

to be more widely available across the

entire sector to effectively support other

applications such as EHRs’’ (Ministry of

Health 2005 Aug, 36).

Uses for population health

monitoring and research

Any current and potential uses of

New Zealand’s distributed electronic

health record for population health

monitoring and research should be

viewed within the larger New Zealand

context of its attempts to integrate

population health content development

with national health information

infrastructure development. As indicated

earlier, the Working to Add Value

through E-Information Advisory Board

set forth 10 top priorities in 2001, with

four priorities relating to population

health monitoring: ‘‘collect reliable

ethnicity data’’, ‘‘fix up the National

Health Index’’, ‘‘gather primary care

information’’, and ‘‘sort out health event

summaries—with data dictionaries,

electronic discharges and referrals’’

(Ministry of Health 2001 Oct). These

priorities reflected the Advisory Board’s

assessment of then current shortcomings

with population health information:

‘‘Health providers are collecting large

amounts of data, yet important

information on ethnicity or health status

is not being captured. The collected data

is stored in a variety of databases but

not fed back and is, therefore, of only

limited use. No organisation currently

has a mandate (or resources) to mine

existing healthcare data sets

systematically. Lack of links (such as

NHI) makes research at the population

health level difficult’’ (Ministry of

Health 2001 Oct, 23). Later Ministry of

Health reports identified the need to

improve data in order to match and

support changing service delivery

priorities, including greater integration

between primary and secondary care,

reducing inequalities, and reorganizing

primary care (Ministry of Health 2002

Aug, viii). As the Ministry of Health

increases its emphasis on chronic

disease management for diabetes and

cardio-vascular disease, it also

recognizes needs for new information

(Ministry of Health [hp] Leading for

Outcomes, What is leading for

outcomes?; Protti and Graham 2003,

30).

The Ministry of Health addresses

information needs now through several

national collections, which are a range

of data sets that ‘‘support policy,

research and prioritisation by enabling

the analysis of national trends and

outcomes’’ or ‘‘support the delivery of

healthcare’’ (Ministry of Health 2005

Aug, 39). Depending upon the specific

purpose of the national collection, either

the NHI number or encrypted NHI

number and personal information is

included. National collections include

the Breast Cancer Screening

Programme, Maternity and Newborn

Information National Collection,

Medical Warnings System, Mortality

Collection, National Health Index,

National Minimum Data Set (inpatient

and day patient publicly funded hospital

discharges), New Zealand Cancer

Registry, and the Private Hospital

Reporting System, (Ministry of Health

2005 Aug, 40–42; New Zealand Health

Information Service [hp] Data &

Services). The national collections are

now derived from a variety of

healthcare provider sources in a variety

of ways, including paper forms and

electronic files.

Independent efforts are underway to

extract population health data
Page 38 [ Series 2, No. 143

automatically from physician-held

electronic records on an ongoing basis

as part of the care process.

PREDICTTM-CVD is a Web-based

clinical decision support program that

uses electronic patient records for

profiling cardiovascular risk in

individual patients, and as a byproduct

electronically extracts from electronic

patient records standardized data that

can be aggregated to the practice and

population level. The National Health

Index number is used to link mortality

and National Minimum Data Set

hospital discharge data to data generated

from PREDICTTM-CVD (Entwistle and

Shiffman 2005 Mar; Wells and Jackson

2005 Mar). The Royal New Zealand

College of General Practitioners

Computer Research Network has

extracted clinical and demographic data

from Patient Management Systems used

in a sentinel sample of general practices,

using encrypted NHI numbers as patient

identifiers and as a linkage mechanism

(Dovey and Tilyard 2001; Hall et al.

2002; Tilyard and Dovey 1999).

The Ministry of Health envisions

using physician-held electronic data as

the source for ongoing national

collections. The National Immunisation

Register is conceived as ultimately

leading to a ‘‘hierarachy of registers of

children’’ that would ultimately lead to

‘‘further implementation of electronic

collection of well child information over

time’’ (Ministry of Health 2003 Apr, v;

Ministry of Health 2003 Dec-a, vi, 6–7;

Paediatric Society of New Zealand 2004

Aug). The Health Information Strategy

for New Zealand describes the

distributed electronic health record

model, using as an example the potential

transformation of health event

summaries from the current system with

substantial with local variation, into a

national anchor system. The national

anchor system would include data

shared at the regional level for

healthcare purposes and data aggregated

to the national level for population

health monitoring purposes (Ministry of

Health 2005 Aug, 13). Similar

approaches are contemplated for new

national collections, such as diabetes, in

which data would be generated at the

practice level for care purposes, shared

at the regional level also for care and

practice monitoring purposes, and

aggregated at the national level for

population health information purposes

(Ministry of Health 2005 Aug, 14,

78–79). Other planned national

collections, such as national primary

care and community care collection and

national [hospital] outpatient collection,

would be generated for purposes of

regional and national population health

monitoring (Ministry of Health 2005

Mar, 84–87).
s for electronic health records, by country: 2005

Australia Canada England New Zealand

ealthConnect

Department of Health and Ageing);

ational E-Health Transition

– Canada Health Infoway – National Health Service (NHS)

Connecting for Health

– New Zealand Health Information

Service (Ministry of Health)

uthority

ealthConnect Business

rchitecture, version 1.9 (2004 Nov)

– EHRS Blueprint: An Interoperable

EHR Framework, version 1.0(2003 Jul)

– Information for health: an

information strategy for the modern

NHS 1998–2005, a national

– The New Zealand Health Strategy

(2000 Dec)

– From Strategy to Reality: the WAVE

strategy for local implementation

(1998 Sep)

Project Health information

management and technology plan:

– Building the information core—

implementing the NHS plan (2001

Working to Add Value through

E-information (2001 Oct)

Jan)

– Delivering 21st century IT support

for the NHS: national strategic

– Health information strategy for New

Zealand (2005 Aug)

programme (2002 Jun)

– Making IT happen: Information

about the National Programme forIT (2004)

– Creating a patient-led NHS:

delivering the NHS improvement

plan (2005 Mar)

esign – Design, with broad national target

dates for implementation

– Implementation, with specific

national target dates

– Conceptualization

tial national strategy published in

004ocal pilots implemented and

valuatedocus of responsibility for national

rategy evolving

ey elements of supporting national

ealth information infrastructure

eing specified, including:

teroperability framework, health

cord design, clinical terminologies,

nical information, healthcare

– Initial national strategy published in

2003, with updated strategy to bepublished in 2006

– Strategic investments in key

elements of supporting national

health information infrastructure,

including: registries (client, provider,

and location), interoperable

electronic health record systems,

infostructure, innovation andadoption, and public healthsurveillance

– National strategy iteratively since

1998

– Local pilots implemented and

evaluated

– Implementation of electronic patient

records occurring regionally

– Implementation of electronic health

record occurring nationally

– National strategy published in 2005

entifier, and E-health consent

nder discussion and development, – Under discussion and development, – National Health Service number – National Health Index number

th possibility of adaptation of with emphasis on development of

ements of national health jurisdictional unique identifierssurance number (electronic health record

infostructure client identifier) andinter-jurisdictional identifier(federated identifier)

tial conceptualization of opt-in – Support for ‘‘lockbox,’’ enabling – ‘‘Sealed envelope,’’ enabling – Not ascertained from publicly

onsent for participation in patients to ‘‘mask’’ information at patients to designate information available materials

ectronic health records their request not to be shared beyond their

onsent options currently under immediate clinician

consideration and in development – Limits of ‘‘sealed envelope’’ and

implications for national electronichealth record under discussion

– Pseudo-anonymized and

anonymized data can be shared forpopulation health monitoring

Series2, No. 143[ Page 39
s for electronic health records, by country: 2005—Con.

Australia Canada England New Zealand

tial conceptualization of National – Investment in communicable – Secondary Uses Service – Emphasis on national data

ata Store of electronic health disease surveillance as part of implemented, with emphasis on collections

cords, enabling uses of largely national strategy uses of electronic health records

e-identified data for population and other data streams forealth monitoring population health monitoring

oes not appear as current priority

econdary use

Page 40 [ Series 2, No. 143
Chapter 5. Common

Themes in Interviews

with Expert Informants

in Australia, Canada,

England, and New

Zealand

This section provides an overview

of common themes relating to the

potential contribution of national

strategies for electronic health records to

population health monitoring and

research that emerged from interviews

with expert informants in Australia,

Canada, England, and New Zealand.

Two broad categories of themes are

emphasized here: first, the potential

contributions of electronic health records

to population health monitoring and

research; and second, constraints on the

realization of those potential

contributions.

The reported themes represent the

distilled responses of interviewed

experts. The themes presented in this

chapter should not be interpreted as

objective renditions of the relationships

between national strategies for electronic

health records and population health

monitoring and research: the themes are

presented as reported in the interviews

and do not constitute the conclusions of

this report’s author. Finally, given the

qualitative and minimally structured

interview format, no attempt has been

made to quantify interview results or the

number of informants making a

particular point.

Potential Contribution

Integrating healthcare

performance measurement with

population health monitoring

Informants in all four nations

stressed the potential for shared

electronic health records to lead to

real-time decision support systems and

real-time feedback loop systems for

clinicians and public health practitioners.

What is now regarded as clinical data

could be transformed into statistical data

at population levels: ideally, this

transformation would occur seamlessly.

As articulated by New Zealand experts,

Primary Health Organisations in New

Zealand are already active in population

health management in such areas as

cardiovascular disease, diabetes,

immunization, well child care, and

hepatitis B and C. Widespread screening

of adults ages 45 and over for

cardiovascular disease now occurs

among general practitioners using an

automated Web-based risk assessment

tool. Employing such Web-based risk

assessment tools for patient management

requires the collection of basic risk

factor data, which are electronically

recorded using standard data elements in

standard formats. Although these data

are being collected for solely clinical

patient management purposes, they also

have a high yield for population health

monitoring and healthcare performance

measurement. Collection of the data for

patient management improves data

quality and completeness, in contrast to

data requested or required only for

secondary purposes seemingly unrelated

or only indirectly related to patient

management. Bridges from clinical

patient management to population health

management to population health

monitoring and healthcare performance

measurement are thus built,

transparently to the general practitioners

entering the data. The recently

implemented Leading for Outcomes

chronic disease strategy in New Zealand

was cited as encouraging the inclusion

of standard data elements for selected

diseases and conditions into ‘‘slim and

focused’’ electronic patient records,

potentially resulting in measurements

that can ‘‘cascade’’ from general

practitioners to Primary Health

Organisations to District Health Boards

to the Ministry of Health. Similarly, an

English informant described the

development of ‘‘care pathways’’ for

specific conditions, which will require

general practitioners and other

healthcare providers to enter structured

data pertinent to screening and treatment

into electronic patient records; the

electronic patient records will convert

those structured data into SNOMED-CT

codes, with data aggregatable to

Series 2, No. 143 [ Page 41

practice, Primary Care Trust, Strategic

Health Authority, and national levels.

A Canadian informant stressed that

population health monitoring does not

require different strategies or

information structures than those needed

for healthcare performance

measurement. According to another

Canadian informant, public health

reporting is now integrated into

day-to-day clinical care and medical

records, and could be similarly

integrated with EHRs. Yet another

Canadian respondent stressed that tight

integration of population health

monitoring into electronic health records

can occur.

A related observation was the

potential of electronic health records to

lead to the development of integrated

systems for measuring healthcare system

performance at individual provider and

provider group levels, with provider and

provider group level performance

measures then capable of being

systematically aggregated to population

level health system performance

measurements.

Development of new data sets

for population health

monitoring and research

Informants pointed out that within

ten to twenty years entirely new options

for population health monitoring will

exist as electronic health records

become prevalent. New options for

population health monitoring may be

most evident for the earlier

identification of emerging epidemics and

other public health threats through

electronic health records. In the nearer

term than ten to twenty years, potential

exists for the development of new data

sets, such as post-marketing

pharmaceutical surveillance, surveillance

of adverse drug reactions, and expanded

longitudinal follow-up registries for

chronic diseases and conditions. In

realizing this potential, new data sets

could be iteratively implemented as

EHRs are phased in on geographic or

healthcare provider site bases, leading to

the possibility of ‘‘early wins.’’ If

electronic health record penetration is

higher in acute care hospitals than in

primary care settings, the potential for
Page 42 [ Series 2, No. 143

early wins was identified as highest for

hospital-based data sets. Respondents

also indicated additional potentials for

transforming currently highly-targeted

surveillance systems to broader based

population health monitoring, and for

incorporating some current survey

questions into EHRs on a routine basis,

such as questions relating to functional

status, disability, smoking, and obesity.

Based on the comments of the

interviewed experts, it seems that these

new data sets for population health

monitoring derived from EHRs are

envisioned as developing through

information captured by the healthcare

provider or extracted from electronic

patient records and other clinical and

administrative information systems and

then transmitted to electronic health

records.

Patient identification

When national, or state and

provincial uniform patient identification

systems include core demographic data,

EHRs provide potential for stratifying

by various demographic characteristics

healthcare and population health

outcomes measurements that are

routinely available for analysis. The

unique NHS number was mentioned as

‘‘giving an edge on other countries

through improving data quality and

allowing linkage’’ of EHRs with other

data bases, such as cancer incidence

data in cancer registries, for population

health purposes.

Implications for population

health research

Electronic health records could

transform both clinical research and

population health research. Once

electronic health records penetrate acute

care hospitals and primary care practices

to a sufficient extent, a major paradigm

shift could occur in population health

and clinical research, enabling ‘‘one stop

shopping’’ for healthcare, clinical

research, and population health research.

The ‘‘hybridization of data’’ could

occur, erasing current distinctions

between clinical data and population

health data. The conduct of research

could change. EHRs could eliminate the

need for medical record abstraction, as

the formerly manually abstracted data

could be automatically extracted from

EHRs. Research resources currently

devoted to abstraction from medical

records for clinical, population health,

and health services research could be

redirected. Australian, Canadian, and

English informants predicted that any

replacement of current data collections

by EHRs is most likely to occur initially

for administrative health data, such as

hospital discharge data. Several English

experts also predicted that EHRs will

feed data to or ultimately replace some

current disease registries. Most likely for

replacement are those disease registries,

such as cancer registries, which already

rely on semi-automated data collections.

New types of data: In addition to

replacing current semi-automated

disease registries, electronic health

records could also enable creation of

new population- and practice-based

disease registries; current registries

might persist but with data automatically

extracted from electronic health records.

New disease registries and the EHRs

that support them will yield populationbased morbidity and disease prevalence

data, now largely unavailable. Electronic

health records will make available on an

ongoing basis data that are currently

available only through resourceintensive data linkage, especially in

those nations without national or

sub-national unique patient identifiers or

regional patient registers. EHRs utilized

throughout healthcare systems will

enable tracking of how people move

through and beyond the healthcare

system. Trajectories of healthcare for

patients with different profiles and for

different subpopulations will be more

readily investigated, including key

transitions between different health

states and different parts of healthcare

systems. EHRs will enable

‘‘understanding the nature of the fire

and not just seeing the smoke.’’

Linkage: Electronic health records

linked with or providing administrative

data would constitute the ‘‘best of all

worlds’’ for health services research

explained one Canadian informant; and

English informants discussed the

potential for supplementing

administrative health data with

laboratory and prescription data. English

informants stressed the opportunities for

improved population health research

with implementation of EHRs, but did

so within the context of the Secondary

Uses Service managed by the new

Health and Social Care Information

Centre, which will maintain both

electronic health record extracts as well

as other National Health Service clinical

and administrative data sets. One

English informant discussed the

potential offered by supplementing

existing population health data

collections with data included in the

Secondary Uses Service, especially

when the SUS contains more clinically

rich data. Another English informant

pointed out as an example that such

clinically rich data, derived from the

NHS Care Record, would allow

researchers to measure the prevalence of

clinically recognized cardiovascular

disease; match cardiovascular disease to

risk factors such as smoking, body mass

index, cholesterol and high blood

pressure; link to the mortality file; and

identify populations with the greatest

potential for successful interventions.

The EHR, linked to population health

monitoring data collections, could

provide better support for both clinical

medicine and public health and for both

patients and populations. Linkage of

existing data collections to extracts from

EHRs in the NHS’ Secondary Uses

Service was viewed ultimately as

relatively easy to do with relatively

small investments and large pay-offs.

Sampling: Given population-based

implementation, electronic health

records may introduce new sampling

options on a widespread basis. EHRs,

together with associated populationbased uniformed patient identification

numbers or patient registries, will serve

as sampling frames. Enhanced case

identification will occur through EHRs,

such as defining and identifying cases

based upon combinations of test results,

symptoms, and diagnoses. Improved

sampling stratification will occur, based

upon the wider range of more readily

accessible variables in EHRs; this could

include stratification based upon clinical

data available in EHRs, functional status

measurements, as well as demographic

characteristics. Similarly, EHRs will
Series 2, No. 143 [ Page 43

introduce new options for randomized

designs of clinical trials through

integrating randomized designs with

population-based research. EHRs were

also viewed as introducing new options

for drawing samples in studies to

follow-up on clinical and public health

interventions. Distinctions between

sampling frames and data sources could

be minimized or eliminated: when EHRs

achieve full penetration into a

geographically-based population, EHRs

could serve the dual purposes of

sampling frames and data sources.

Glimpses into the future of

electronic health records and

population health monitoring

and research

Several informants emphasized that

‘‘little pockets’’ of current projects and

activities can provide glimpses of what

may ultimately be feasible through

widespread or population-based adoption

of electronic health records. For

example, various syndromic surveillance

projects were mentioned as the ‘‘thin

edge of the wedge in terms of raising

awareness of utility and quality of

electronic health records for population

health monitoring.’’ Similarly, the New

South Wales emergency department

automated surveillance project in

Australia and the Medical Office of the

21st Century project in Montreal,

Canada (‘‘MOXXI’’) were also

mentioned as potential case examples

that could reveal hints of the eventual

contribution of shared EHRs to

population health monitoring and

research (Muscatello et al. 2005;

Tamblyn et al. 2003).

The tenor and content of the

glimpses provided by English

informants into the future of electronic

health records and population health

monitoring and research had some

fundamentally different elements than

the glimpses provided by Australian,

Canadian, and New Zealand informants.

Especially notable among many English

informants was their speaking of

population-wide implementation of

EHRs as inevitable within five to at

most ten years, in contrast to some

informants in Australia, England, and

New Zealand, who expressed greater

skepticism about population-wide

implementation informants, when

speaking of the future, often referred to

the specific implementation plans and

activities underway in the NHS since

the publication in 1997 of The new

NHS, in 1998 of A First Class Service

and Information for Health, and in

numerous other publications since.

English key informants typically pointed

out that the investment in National

Programme for Information Technology

has been ‘‘huge on a per capita basis’’

and its ‘‘sheer scale is colossal.’’ NPfIT,

including its electronic health records,

‘‘will be magnificent if it works, and a

huge failure if not’’ with ‘‘immense’’

and ‘‘massive’’ potential. Despite shared

concerns about meeting promised

timeframes and professed insufficient

clinical and public health input, to be

discussed in Constraints below, several

English informants maintained that they

were ‘‘confident that the right thing will

happen in the implementation of the

NHS Care Record’’, which will function

as an electronic health record. One

informant described himself as ‘‘excited

by the opportunities [presented by

NPfIT, the NHS Care Record, and SUS]

for better analysis of care and better

feedback to clinical staff about

processes and outcomes’’. He added that

‘‘most clinicians now don’t know how

good they are’’ and the ‘‘need for

reflective clinical practice’’ will be met

through NPfIT. Other English

informants pointed to the shared EHR as

a ‘‘huge treasure trove’’ of data for

population health’’ and as the ‘‘largest

epidemiological data base in the world.’’

SUS was described as holding

‘‘enormous potential to look at whole

populations’’ through its ‘‘lifelong

record of encounters and pathways

through the health system,’’ and as an

‘‘huge opportunity to bring clinical

information into population health and

to add value to the Personal Spine

Information Service.’’ Another English

key informant described ‘‘NPfIT and

SUS as the right model for creating a

system to allow analysis of population

health.’’

Constraints

National strategies for

electronic health records

Experts in Australia, Canada,

England, and New Zealand emphasized

that national strategies for electronic

health records and electronic patient

records focus on clinical care: the

emphasis is also reflected in preceding

sections of this chapter. National

strategies have been developed in

response to perceived needs for

improving healthcare systems, with

improvement defined in terms of

increased efficiency, controlled costs,

improved quality, and enhanced patient

safety. Improving clinical care is viewed

as the priority, not improving population

health. Even when included in national

strategies for electronic health records,

population health monitoring and

research are regarded as a secondary

uses of electronic health records. In

Australia, concern was expressed that

the public may view the potential uses

of EHRs for any purposes other than

clinical care as a negative; if such

concerns became prevalent or

pronounced, they could derail the

national agenda for EHRs. In Canada,

the public health was described as

‘‘separate and independent’’ from

Canada Health Infoway’s agenda for

electronic health records; to the extent

that public health has entered into the

national strategy for EHRs, it was

viewed as a response to the SARS

outbreak of 2003 and the 9/11 terrorist

attacks in the U.S. In England, an

informant with national public health

responsibilities described the NHS Care

Record a having ‘‘no public health

agenda’’ and asserting that ‘‘public

health was thought about late in the

day.’’

Informants in all four nations who

are involved in the development and

implementation of national and

sub-national strategies for electronic

health records stressed that carefully

delimiting those current agendas is

necessary in order to avoid endangering

the operational goals of building and

disseminating EHRs, including primarily

clinical care but also healthcare
Page 44 [ Series 2, No. 143

management. For example, an English

informant with sub-national EHR

responsibilities described the National

Programme for Information Technology

agenda as experiencing ‘‘scope creep’’

and ‘‘trying to do too much and trying

to do it all at the same time.’’

Australian, Canadian, and New Zealand

informants emphasized the need for

manageable, achievable short-term

agendas for EHRs, defined in terms of

achievements within five years. One

New Zealand expert, for example,

described New Zealand’s strategy as

‘‘you eat an elephant one bite at a

time.’’ In Australia and Canada,

concerns were expressed that the

inclusion of population health

monitoring and research within the

short-term agendas might interfere with

the primary goals. At the same time,

these informants did not reject

population health monitoring and

research as a longer-term application of

electronic health records. They

emphasized that a fuller, long-term

electronic health records strategy could

not be achieved rapidly or all at once:

different elements of the strategy will

need to be phased in and rolled out at

different times, with population health

monitoring and research clearly falling

within a longer-term agenda.

Within both Australia and Canada,

informants involved in population health

monitoring and research emphasized that

gaps exist between national strategies

for electronic health records, on the one

hand, and the reality of the

implementation of those strategies, on

the other hand. A ‘‘huge gap’’ was

described between the current reality,

practicality, and achievability of

implementation of EHRs, on the one

hand, and larger visions for EHRs. One

informant described this as ‘‘big talk,

small achievement,’’ emphasizing that

the infrastructure necessary for

supporting EHRs has not yet been

developed: at least in Australia, this

informant said, currently no examples

exist illustrating the uses of EHRs for

population health research.

Also in Australia and Canada,

issues relating to jurisdictional and

inter-governmental authority were

viewed as impeding the successful

implementation of national strategies for

electronic health records. A Canadian

informant described a ‘‘stand-off’’

between different layers of government

as likely to threaten any national

agendas for the development of EHRs

with clinical records or data sharable

beyond provincial borders; an Australian

informant emphasized the power of the

states and the need to ‘‘convince every

state’’ in advancing the national agenda

for shared EHRs. Any linkage of data

derived from EHRs with population

health data sets was viewed as at least

five to ten years away, and is viewed as

most likely to occur at Canadian

provincial or Australian state levels,

rather than nationally. Similarly, the

‘‘complexity of stakeholders’’ and the

‘‘need to get every stakeholder on

board’’ was viewed as impeding the

implementation of national strategies for

electronic health records in Canada and

England by informants, and especially

advancing public health interests within

those agendas.

Interviewed experts also emphasized

that governmental policies and

jurisdictional structures play central

roles in facilitating or hindering the

development and implementation of

electronic health records. New Zealand

informants pointed to their country as a

nation-state with no federal-state tension

and a ‘‘simple’’ healthcare system as

helpful factors in advancing its national

strategy. The existence of a

‘‘comprehensive, single, publicly-funded’’

healthcare system in England was

described as making the implementation

of the National Programme for

Information Technology as ‘‘not easy, but

more straight-forward.’’

Regardless of governmental

structures, several informants in the four

nations indicated that national leadership

is a critical factor in implementation of

national strategies for electronic health

records, including ‘‘political will,’’

‘‘clear signals about direction,’’ and

what a New Zealand key informant

described as ‘‘crystal clear articulation

of strategic direction.’’ Leadership and

clear guidance about what EHRs should

deliver were articulated as being

especially important for secondary uses

of EHRs for population health

monitoring and research, regardless of

whether the national strategy for

electronic health records was England’s

‘‘big bang’’ approach with National

Health Service-wide implementation of

electronic patient records and electronic

health records, or the more incremental

approaches of Australia (described as

‘‘lower risk’’) and New Zealand

(described as ‘‘non-intervention’’).

In Australia, informants with

population health monitoring

responsibilities described themselves and

their colleagues as adopting a ‘‘sit back

and wait’’ attitude towards the national

strategy for electronic health records and

nationally-funded EHR pilot projects,

partially because the ‘‘nut of what goes

in health event summaries’’ has not been

decided. An Australian informant

described a twofold strategy. As the first

part of this strategy, officials with

population health monitoring

responsibilities should work to ensure

that national emphases and funding of

the national strategy for EHRs does not

threaten the successes already achieved

and being achieved in Australian

population health monitoring, including

the development of minimum data sets

that can be aggregated nationally, state

and territorial agreements for national

data aggregation, and data standards.

The second part of this strategy is

specific to standards: those responsible

for population health monitoring and

research should involve themselves in

the development of standards for EHRs

and related national health information

infrastructure components. The rationale

for this involvement is not based upon

any prediction that the national strategy

for electronic health records will

eventually prove successful, but rather

that if such success does occur, the

resulting EHRs should at a minimum be

compatible with standards used in

current population health monitoring

data sets. Some English informants

described themselves as awaiting key

operational decisions about the

Secondary Uses Service, including the

derivation of SUS data from health

events and event messages contained in

the Personal Spine Information Service

or abstracted directly from Local

Service Providers.
Series 2, No. 143 [ Page 45

General practitioners

In all four nations, the organization

of primary care was cited by informants

as essential to the success of national

agendas for the development of

electronic health records generally, and

for optimizing the potential contribution

of EHRs to population health

monitoring and research specifically.

Concerns were expressed by informants

in Australia and Canada that the current

organization of primary care would

constrain the adoption of electronic

patient records and EHRs. In Australia,

an informant described primary care as

‘‘operating on a small business model,

even though it’s funded by the

Commonwealth’’ and the ‘‘small

business model’’ was viewed as

potentially impeding the implementation

of EHRs.

Information technology, it was

pointed out, will not solve current

‘‘social and cultural’’ issues affecting

how data are used within the National

Health Service, including ‘‘how

medicine in England moves from

autonomous practices to a marriage of

individual [practitioners] and supportive

systems’’ based partially upon the use of

data derived from EPRs and EHRs.

Similarly, the implementation of agendas

for EHRs was described as ‘‘hang[ing]

critically on human factors’’ and on

‘‘human problems’’ with general

practitioners’ use of computers. General

practitioner-specific issues mentioned by

informants included what an English

informant described as the ‘‘huge

practice change’’ made necessary by

information technology and the need for

general practitioner trust and clinical

ownership of the National Programme

for Information Technology agenda;

other informants mentioned the apparent

willingness of general practitioners to

use computers for prescribing but not

for entering diagnoses. The need for

business model and cultural changes in

general practice was described, as well

as generational changes among general

practitioners. An Australian informant

indicated that the benefits of EHRs for

general practitioners will occur at small

local levels, rather than at regional or

national levels. Similarly, an English

informant maintained that the Personal

Spine Information Service ‘‘might be

useful for one patient out of a

thousand’’, indicating that few of his

patients required out-of-area treatment

and especially out-of-area emergency

treatment. The local nature of the

benefits of EHRs for general

practitioners was seen as constraining

general practitioner support for use of

EHRs for population health monitoring.

Experts in Australia, Canada, and

New Zealand emphasized the need to

provide incentives and alignment of

incentives for general practitioners to

adopt electronic patient records and to

provide data for and utilize electronic

health records and to use common

terminology meeting national standards.

Strategies for providing incentives to

general practitioners for implementation

of EPRs and to provide data for EHRs

need to be based upon the recognition

that at the local level, EHRs can be

useful even without extensive utilization

of coding, classification, and

terminology standards.

Several informants directly linked

their perception of issues around the

uptake of electronic patient records and

electronic health records by general

practitioners to their perception of the

potential contribution of EHRs to

population health monitoring and

research. An English informant

described an ‘‘imbalance’’ between

‘‘those who do the work on entering

secondary data [into EHRs] and those

who benefit from it.’’ If general

practices are asked to collect additional

data for population health monitoring

and research purposes, then the

additional data collection must fit into

the primary care work flow and general

practice business needs. In Australia, an

informant articulated concerns about

collecting any population health data not

of direct value to clinicians. The

collection of population health data by

clinicians for entry into electronic

patient records and entry into or

transmittal to EHRs was viewed as

dependent upon four factors: first, strong

clinical buy-in; second, specificity as to

purpose; third, fitting into the routine

process of care with minimal data input;

or fourth, automated extraction of data

for secondary uses. Any expectation that

clinicians would enter data not needed

for clinical purposes but needed for

population health monitoring or other

national purposes was described as

problematic. The time pressures on

general practitioners need to be

recognized and successfully dealt with if

population health monitoring and

research add additional burdens to

clinical data entry into EPRs and EHRs.

In Canada, one informant responsible

for population health monitoring

expressed concern that adoption of

EHRs will be accompanied by transition

periods during which general

practitioners will be asked to ‘‘shadow

bill’’ in order to continue generating

data currently collected for population

health monitoring purposes.

Standards

Informants discussed several issues

relating to standards as a constraint on

the potential contributions of national

strategies for electronic health records to

population health monitoring and

research. One issue is current limitations

on the adoption of standards. While

agreed upon standards exist for coding

and classification, informants in

Australia indicated that similar

agreement has yet to be reached for

reference terminologies and common

abbreviations used in medical records. A

concern was expressed that the

development and adoption of relevant

standards are not keeping pace with the

rapid development and deployment of

EHRs.

Informants also pointed to areas in

which additional standards development

needs to occur. Again in Australia, the

need for standards for electronic patient

records and electronic health records

was stressed. For example, one

informant emphasized that standards are

needed for EPR and EHR functionality

and interfaces: if front ends differ

among EPRs or among EHRs, and if

pick lists are presented differently with

individual items in different orders in

different EPRs or EHRs, variation will

be introduced into recorded data

resulting from the EPR and EHR data

entry screens rather than from actual

differences among patients and

practices. If EHRs are to be used for

population health monitoring and
Page 46 [ Series 2, No. 143

research, common standards will also

need to be adopted for clinical,

administrative, and population health

data sets.

Several English experts honed in on

issues about the granularity of standards

and data to be contained in electronic

health records as embodied in the NHS

Care Record, especially relating to

clinical practice, medical research, and

population health monitoring and

research. Referring to the NHS Care

Record, a key informant asked

rhetorically ‘‘What questions could it

legitimately answer?’’; he then

proceeded to say that the Secondary

Uses Service’ service management

agenda is ‘‘coarse grained’’, while

research needs are more fine-grained.

Another English informant pointed out

that granular terms and data can yield

coding and classifications useful for

population health monitoring and

research, but the more coarse-grained

coding and classifications often have no

clinical utility and cannot yield the more

granular terms and data needed for

patient care and medical research. The

same English informant, with national

responsibilities for EHRs, emphasized

the data sets are ‘‘defined in a particular

way for a particular purpose’’ and that

the purposes differ for reimbursement,

service review, population health

monitoring, and clinical medicine.

Similarly, an Australian informant

indicated the importance of ‘‘purposedriven tasks’’ and stressed that

population-based registries and EHRs

and their supporting standards, have

different purposes. To be successful for

both population health and medical

research purposes, an English informant

said, EHRs will need breadth in terms

of patients and depth in terms of data,

with a mapping layer permitting

movement from granular data for

medical care and research to coarse

grained data for population health

monitoring and research. For English

informants, of particular importance was

whether and how data would move from

clinical systems and electronic patient

records into the Personal Spine

Information Service and then into the

Secondary Uses Service.

English informants pointed to the

comparability of clinical standards with

population health coding and

classification standards as a crucial

issue. An English key informant

discussed his vision for solving this

problem through the use of an ‘‘extract,

transform, and load’’ function within the

NHS Care Record. Operational data

such SNOMED-CT coded facts would

be extracted from the electronic patient

record and used as input to the

electronic health record, then

transformed into forms useful for

analysis, service management, billing,

and so forth, and stored in the

Secondary Uses Service.

A final standards-related theme that

emerged is the need for the provision of

incentives to general practitioners for

actually using standards once electronic

health records are deployed, especially

for using common terminology,

depending upon the nature of the EHRs

themselves. An English informant

mentioned the ‘‘need to sell to clinicians

the use of systematic, structured and

automatically encoded data.’’ Various

types of incentives and ‘‘paybacks’’

were suggested by key informants in all

four nations, ranging from financial

incentives, to improved practice and

practice site-level benchmark data, to

clinical decision support systems, to

individual patient-level warnings. A

New Zealand informant pointed to the

‘‘fundamental problem in any move

from paper to paperless records that

don’t also include a move to structured

text.’’

Patient identification

Key informants in Australia and

New Zealand stressed that current

uniform patient identification number

systems have their origins in both

clinical care and in healthcare

reimbursement. In Australia and New

Zealand, uniform patient identification

numbers have not been designed for the

purposes of population health

monitoring or research. In New Zealand,

recognition exists of the need to

de-duplicate uniform patient

identification numbers at the national

level in order to ensure that each person

has single unique patient identification

number; in other words, each person

must hold a single patient identification

number, and each patient identification

number must be assigned to only a

single person. But even with deduplication of national unique personal

identification numbers in New Zealand,

concern was expressed that the National

Health Index would not be used to the

full extent possible for population health

monitoring, illustrated by the continued

creation of stand-alone population-based

registries. In addition, concern was

expressed that current patient

identification numbers in New Zealand

may not extend to the entire population,

leading to limitations if the National

Health Index is to be used for

population health monitoring purposes.

Data quality

Informants with responsibilities for

population health monitoring and

research stressed that if electronic health

records are to be used for monitoring

and research, EHRs will need to provide

the same high quality, robust data that

are currently required from existing

ongoing data systems. According to an

English informant, the EHR will not

solve the problems of inconsistent

capture, inaccuracy, and incompleteness

that currently occur with medical

records. Another English expert

emphasized that, in order for EPRs and

EHRs to be useful for population health

monitoring and research, implementation

of a local data quality cycle will be

essential. Several key informants pointed

out that full population coverage will be

necessary if EHRs are to replace

existing population health data

collections that are population-based.

The same key informants expressed

skepticism that EHRs could produce

data of sufficient validity and reliability

to replace existing population health

monitoring data collections. The quality

of data entry by general practitioners

was particularly questioned, and

described by one informant as generally

‘‘partially to totally disastrous.’’ The

same informant expressed doubt that

EPRs and EHRs will improve upon the

accuracy of general practitioners’

paper-based clinical records. Both

population health monitoring and

population health research require high

quality, robust data. An Australian
Series 2, No. 143 [ Page 47

expert stressed that ‘‘an imperative

exists not to move backwards in terms

of data quality.’’ He went on to say that

Australia ‘‘now has an excellent

[population] health information system

in the absence of a national health

information infrastructure and wide use

of EHRs’’ and his overwhelming

concern is not to have the current health

information systems adversely affected

by the move towards EHRs.

Confidentiality and patient

consent

Informants in all four nations cited

privacy issues as constraints on the

potential contribution of national

strategies for electronic health records to

population health monitoring and

research. In Australia, concerns were

cited about the consistency and coverage

of Commonwealth and state statutes,

especially in terms of the applicability

of statutes to both private and public

healthcare sectors, to both paper and

electronic clinical records, and to both

clinical and population health research

data. One informant pointed out that

even if issues relating to other

constraints on using EHRs for

population health research were

removed, issues would still remain

around the development of legislation

and protocols enabling researcher access

to EHRs.

Closely tied to key informant

discussions of confidentiality legislation

as a constraint were discussions of

patient consent. In both Australia and

Canada, informants mentioned that the

nature of national strategies for

electronic health records and the speed

of their implementation need to be

balanced against the possibility of

raising public fears about privacy and

consequent opposition to EHRs.

Australian informants mentioned the

Commonwealth government’s desire to

avoid public debates about data privacy

as driving HealthConnect’s decisions

about patient consent for electronic

health records. The desire to avoid

public debates about the privacy of data

held in EHRs was viewed by informants

as resulting from government worries

about repeating the Australia card debate

of the 1980s, which revolved around

proposals to institute a national identity

card. In Australia, public demands were

cited for freedom of choice about the

uses of EHR data, including demand for

patient permissions if de-identified data

were to be released for research or

monitoring. The Commonwealth

government, through HealthConnect,

initially supported flexible and extensive

patient ‘‘opt-ins’’ for EHRs. The opt-ins

included patient choice of whether any

or all information would be included in

EHRs: patients could choose to include

or exclude information from EHRs, such

as information about particular

healthcare encounters, health events, and

diagnoses, as well as whether particular

information would be made available to

specific other providers or to the

National Data Store for particular

purposes, such as population health

monitoring or research. The nature of

the EHR opt-in was viewed by

Australian experts as a major constraint

on any uses of EHRs for population

health monitoring and research. One key

informant pointed out that fewer

incentives would exist for infrequent

users of healthcare services to consent

to EHRs than for more frequent users.

Flexible EHR opt-in was repeatedly

mentioned by Australian informants as

preventing the development of

population-based data, because of its

impact on obtaining complete data

representative of populations. Finally, an

Australian informant expressed

skepticism about whether the national

EHR structure envisioned in

HealthConnect could ‘‘handle the

complexities’’ of a flexible consent

model.

Also mentioned were fears about

patient access to electronic health

records, and how such access might

interfere with uses of EHR data for

population health monitoring and

research. For example, it was envisioned

that private firms would develop

services based upon obtaining access to

information held in EPRs and EHRs.

Access to information included in EPRs

and EHRs might be legally obtained by

providing to patients financial or other

incentives for release of their data.

Concerns were expressed that such

services might both make patient

consents for EHR release for research

and monitoring less likely without

incentives, as well as create potential

confusion among patients about privacy

guidelines for different types of EHR

releases.

Population health monitoring

In addition to discussions of more

general constraints on the potential

contribution of national strategies for

electronic health records to population

health monitoring and research,

informants also provided some more

specific insights. To be usable for

population health monitoring, EHRs will

need to achieve full population coverage

so that they can mirror current

population-based data collections.

Failing full population coverage, EHRs

might be useful for population health

monitoring if two criteria were met:

first, if EHRs cover a known

subpopulation and the demographic

characteristics of the covered and

uncovered subpopulations are known;

and second, if data extracted from EHRs

for the known subpopulation covered by

EHRs were comparable to data derived

through other data collections from the

remaining subpopulation not covered by

EHRs. A Canadian informant pointed

out that population health monitoring

could not depend upon EHRs alone:

subpopulations exist that do not access

healthcare; much of population health

monitoring, such as population-based

surveys, is not health event-based and

depends for validity on data collection

that is off-cycle with healthcare

encounters; and, as indicated above,

patient consent issues may interfere with

extracting data from EHRs for

population health monitoring purposes,

especially for some health events,

diagnoses, and procedures that may be

regarded as particularly sensitive.

Informants in Australia and Canada

pointed to lack of awareness of the

potential of electronic health records for

population health monitoring and

research as an important constraint. This

lack of awareness was cited on the part

of both population health monitoring

and research professionals, on the one

hand, and experts responsible for

developing national strategies for

electronic health records, on the other
Page 48 [ Series 2, No. 143

hand. Concern was expressed that the

public health sector is not as focused or

as strategic as the healthcare sector:

public health officials are viewed as not

represented as stakeholders in

discussions and negotiations around the

development of national and subnational agendas for EHRs. Canadian

experts indicated that the inclusion of

public health in the development of

national strategies for electronic health

records seems to be limited to

communicable diseases, laboratory data,

bioterrorism, and sentinel events, rather

than consideration of the full breadth of

population health monitoring.

Australian informants expressed

methodological concerns about the

potential utility of electronic health

records for population health

monitoring. EHRs were viewed as

generating huge volumes of data. New

methods will need to be developed for

dealing with the volume and complexity

of EHR data. In particular, new

methodologies would need to be

developed for transforming free text

entries in EHRs into usable data, even if

national clinical terminology standards

are adopted. An English informant

questioned whether the masses of data

generated by EPRs and potentially

included in EHRs could be analyzed in

ways that generate intelligence. One

Australian informant stressed that

Australian population health monitoring

is ‘‘not now industrialized, and currently

relies more on a craft guild model.’’ As

a consequence, skepticism was

expressed that the large-scale

methodological changes needed for

utilizing EHR data could be identified

and incorporated into population health

monitoring.

Experts in Australia, Canada, and

England questioned whether any parts of

present population-based surveys could

be replaced in the short- to mediumterm by EHRs. Informants said that

survey items are not now used during

routine patient care and thus survey

items would not be collected for the

EPR and EHR during the patient care

process. Informants also mentioned that

general practitioners and other clinicians

would not take the time to collect and

enter the ‘‘contextual’’ information

needed for surveys, such as socioeconomic status and ethnicity.
Series 2, No. 143 [ Page 49

Chapter 6. Common

Themes in Interviews

with Expert Informants

in the U.S.

This chapter provides a qualitative

review of themes that emerged in

31 interviews with U.S. experts,

with emphasis on the potential of

electronic health records for population

health monitoring and research in the

U.S. and the constraints on achieving

that potential. Some themes reported on

in this chapter are similar to those

derived from interviews with experts in

Australia, Canada, England, and New

Zealand, and reported in Chapter 5.

However, the U.S. context, including its

health system and national strategies

related to electronic health records,

differ from those of the other four

countries. Consequently, the themes

emerging from the U.S. interviews are

reported here separately.

Potential Contribution

Electronic patient records and

electronic health records as

transformational for American

healthcare and public health

Increased interoperability of

electronic patient records was viewed by

one U.S. informant as ultimately leading

to improved healthcare, reduced errors,

and increased opportunities for

performance monitoring. Another

informant indicated that a ‘‘tipping

point’’ may have already been reached

in the dissemination of electronic patient

records although not in electronic health

records. This informant predicted that

within three to five years, forty to fifty

percent of healthcare organizations

would have some form of EPRs but not

EHRs. EPRs were viewed as likely to

result in a ‘‘huge explosion’’ of clinical

and public health research, especially

relating to genetic data. Another

informant described his vision of all

mandatory public health reporting being

replaced with data derived from EPRs

(see more on this topic in Scenarios

below). A third informant discussed

EPRs as leading to a ‘‘transformational

stage for public health, similar to what

laboratory data did for early infectious

disease surveillance.’’

The transformation of public health

through electronic patient records was

viewed by several informants as

resulting from a changed vision of the

value of data, with EPRs leading to an

emphasis on managing population health

through clinical care informed by public

health data. An informant argued that

the inclusion of ‘‘improve population

health’’ as the fourth goal in The

Decade of Health Information

Technology: Delivering Consumercentric and Information-rich

Healthcare—Framework for Strategic

Action resulted from the potential high

impact of population health, with its

likely impact on other aspects of the

U.S. healthcare system (Thompson and

Brailer 2004 July 21). Other experts

maintained that the ‘‘real return’’ from

EPRs and EHRs would come from

public health ‘‘views’’ of derived data

and their uses for pay for performance

and other performance measurements.

Similarly, another informant maintained

that the vision of population health

tracking, assessment of health status,

and assessment of quality of life

remained essential to the development

of EHRs.

Some informants envisioned a joint

transformation of public health and

clinical medicine resulting from

electronic patient records and electronic

health records through removing current

barriers between clinical care and public

health. One informant described

informatics and EPRs as the ‘‘Trojan

horse’’ through which increased

connections between clinical medicine

and public health would be facilitated

and both transformed. The enhanced

incorporation of population health data

and public health interventions into

EPR-based clinical decision support

systems was cited by several key

informants. Clinical decision support

systems were viewed as a means of

providing population health data to

physicians for supporting the care of

individual patients without ‘‘getting in

the way’’ of how physicians conduct

their practices.

‘‘Shining hopes’’

Key informants emphasized the

existence of various efforts in the U.S.

that could demonstrate the utility of

electronic patient records and electronic

health records for population health

research and monitoring. Some of these

efforts have been invested in and

developed over several years, even if

their connections to population health

monitoring and research are germinal.

Examples cited by U.S. key informants

include:

+ Centers for Disease Control and

Prevention (CDC): One key

informant described CDC as already

pursuing the replacement of separate

data collection streams with

integrated data reporting from

electronic clinical information

systems maintained by large,

multi-jurisdictional laboratories to

states and then to CDC; 26 states

were described as utilizing some

form of electronic laboratory

reporting utilizing pre-existing

clinical data created as part of the

clinical record. Facilitated by

specifications developed through the

National Electronic Disease

Surveillance System (NEDSS) and

Public Health Information Network

(PHIN) efforts, this work was

viewed as directly extensible into

cancer registration and syndromic

surveillance via the BioSense

initiative to ‘‘to support enhanced

early detection, quantification, and

localization of possible biologic

terrorism attacks and other events of

public health concern on a national

level’’ (Bradley CA, Rolka H,

Walker D, Loonsk J 2005 Aug 26,

11). improve early event detection.

These efforts were viewed as initial

attempts only, presently constrained

by needs for interested public health

users willing to cope with dual

reporting systems as a long-term

interim step. (For additional

information, see: Centers for Disease

Control and Prevention [hp]

National Electronic Disease

Surveillance System; Centers for

Disease Control and Prevention [hp]

Public Health Information Network;
Page 50 [ Series 2, No. 143

Centers for Disease Control and

Prevention [hp] PHIN: BioSense.)

+ Indian Health Service: Several key

informants pointed to ongoing

activities of the Indian Health

Service (IHS) as examples of the

potential of EPRs and EHRs for

population health monitoring and

research. Indian Health Service

efforts include the Clinical

Reporting System (CRS), described

as currently used for national level

clinical performance monitoring and

reporting to Congress and local level

analyses, with a national level data

warehouse currently being

developed to include data extracted

from local level healthcare facility

warehouses. Although a key

informant described a current system

in which data are primarily entered

into the Clinical Reporting System

from health summaries generated

from paper records, the ultimate

goal is to have Clinical Reporting

System data generated from the IHS

Electronic Health Record. CRS and

the IHS Electronic Health Record

were portrayed as tools for

population health monitoring,

including assessing population

health status and quality of life.

Especially important has been the

development of local IHS codes for

various health factors, initially

limited to factors related to diabetes

mellitus, alcohol use or abuse,

tuberculosis status, and tobacco use,

and now expanded to factors related

to intimate partner violence/domestic

violence screening, suicide

surveillance, and other issues. (For

additional information, see: Cullen T

2005 May 18; Grenier D 2004 Apr

13; Hays H 2003 Nov; Hays H 2004

Apr 22; Sequist TD, Cullen T,

Ayanian JZ 2005 Dec; U.S.

Department of Health and Human

Services, Indian Health Service [hp]

CRS (Clinical Reporting System,

formerly known as GPRA+); U.S.

Department of Health and Human

Services, Indian Health Service 2003

Feb 10; U.S. Department of Health

and Human Services, Indian Health

Service [hp] Welcome to the IHS

Electronic Health Record Website.)

+ Indiana Health Information

Exchange (IHIE): Several key

informants described the Indiana

Health Information Exchange as an

especially well-established example

of electronic interchange of health

data based upon EPRs, already

demonstrating utility for population

health monitoring. According to a

key informant, an essential part of

IHIE’s vision is the ultimate

replacement of all mandatory public

health reporting through electronic

extraction and reporting of data,

‘‘creating a person-centric data

system for public health through

driving all data into one location.’’

This was described as already

having been implemented for several

data collections that are health

event-specific, such as laboratory

data and screening of hospital

discharges for congenital anomalies,

and as especially appropriate for

hospital-based births, deaths,

syndromic surveillance, and

mandated sentinel reports not

derived from laboratory data.

Telephone follow-ups were regarded

as still necessary for some data

collections. As described by key

informants, an important part of the

IHIE vision is the provision of

population-based information (such

as immunization rates, fulfillment

rates for prescriptions by type, and

patterns of antibiotic use) to

clinicians to aid them in the care of

individual patients, without

interfering with the clinical work

flow. IHIE received AHRQ funding

to implement a statewide public

health surveillance network linking

hospitals to share emergency

department data. IHIE’s success is

viewed as partially resulting from its

direct mediation of state and county

health department work flow

through enabling data to directly

enter the public health work flow.

(For additional information, see:

Biondich and Grannis 2004;

Overhage, Suico, and McDonald

2001; Overhage 2002 Apr 29;

Overhage 2004 Oct 6.)

+ Inland Northwest Health Services

(INHS): According to several

informants, Inland Northwest Health

Services is an example of

well-established electronic sharing

of health information among

hospitals and primary care practices,

with potential for extension to

population health monitoring and

research. The INHS integrated

health information system was

described as reducing the reporting

burden on hospitals for submission

of the Community Hospital Abstract

Reporting System (CHARS) to the

Washington State Department of

Health. Syndromic surveillance is

occurring using hospital data, and

discussions have started regarding

integration of birth, newborn

screening, and infectious disease

reporting into the INHS integrated

information system. (For additional

information, see: Davies J 2004 May

25; INHS [hp] Information

Resources Management.)

+ Kaiser-Permanente: Informants also

described Kaiser Permanente’s plans

to implement geographically

phased-in electronic patient records

for its membership as having

promise for population health

monitoring and research. Several

elements were described as

especially favorable, including

Kaiser-Permanente’s large

membership; its history of using its

electronic data for population-based

research, monitoring, and reporting;

its substantial previous experience in

development of electronic patient

records, together with its experience

in structured data entry for progress

notes; its use of clinical data

repositories; and its attention to

clinical workflow issues in

introduction of EPRs. (For

additional information, see: Backer,

Bissell, and Vigia 2001; Broder

2004 Sep 10; Carroll 2004 Nov;

Chin 2003 Sep 20; Wiesenthal

2003).

+ Utah Health Information Network

(UHIN): Although established as a

‘‘postal service’’ to reduce the

transaction processing costs for

administrative health data, the Utah

Health Information Network recently

received AHRQ funding to develop

UHINClinical to expand the range

of exchanged data beyond

administrative health, to explore the
Series 2, No. 143 [ Page 51

development of a centralized record

locator service, and to utilize data

exchanged within UHIN and

UHINClinical for public health

reporting. According to one expert,

UHIN has already reduced the

healthcare provider burden for

administrative health data, such as

using claims data to populate

immunization registries and to

generate submissions for the Utah

Hospital Discharge Database; and

automated reporting of laboratory

data through a single portal.

Ultimately, automated reporting of

incidence and prevalence data from

EPRs was mentioned as another

possibility. (For additional

information, see: Utah Health

Information Network [hp].)

+ Veterans Health Administration

(VHA): The VHA’s current veterans

health information systems

technology architecture (VistA) and

computerized patient record system

(CPRS) implemented in both VHA

inpatient and outpatient sites, and its

developing HealtheVet, were

mentioned by key informants as

excellent examples of the potential

of EPRs and ultimately EHRs to

support population health monitoring

and research. As described by an

informant, the VHA will maintain a

national data mart, updated on an

ongoing basis, including patientcentric summaries of care provided

in VHA inpatient and outpatient

sites; the expectation is that this data

mart will then serve as the data

source for population- and

facility-based performance and

health monitoring. It should be

noted that the VHA’s VistA-Office

EPR will be made available through

the Centers for Medicare and

Medicaid Services to physicians

within the Doctor’s Office

Quality-Information Technology

program, and VistA has been

adapted by the IHS. (For additional

information, see: Centers for

Medicare and Medicaid Services

2004 Sep 16; Chisholm 204 Aug 1;

Christopherson 2003 Nov 19; Lomas

2003; Perlin, Kolodner, and Roswell

2004; Wark 2004 Nov 9.)

+ Other efforts: Other efforts were

also cited by informants as having

potential for population health

monitoring and research but had

received investments only recently.

One example cited by informants

was Rhode Island’s AHRQ-funded

project to develop a statewide

master patient index, which was

described by an informant as

potentially including the ultimate

development of a de-identified

population health data base. Another

cited example was Tennessee’s

AHRQ-funded Volunteer eHealth

Initiative to develop regional data

sharing within three counties,

including a regional databank

storing core clinical data elements;

provision of population-based data

to public health agencies was

described as an important part of the

Volunteer eHealth Initiative vision.

Scenarios

U.S. informants were asked to react

to four high level scenarios of the future

relationships between electronic patient

records and electronic health records, on

the one hand, and population health

monitoring and research, on the other

hand.

+ The first scenario was the use of

EPRs and EHRs as an additional

data source for current public health

data collections; the use of data

derived from EPRs and EHRs as a

source for cancer registration data,

in addition to manual record

abstraction and electronic extraction

from clinical information systems,

was provided as an example.

+ The second scenario was the use of

EPRs and EHRs to supplement

current public health data collections

on an episodic, project-specific

basis; the use of data derived from

EPRs and EHRs for local fetal and

infant mortality reviews, in addition

to birth data, fetal death data,

medical record abstractions, and

possibly interview data was

provided as an example.

+ The third scenario was ongoing

linkage of data from EPRs and

EHRs with current public health

data collections; linkage of data

derived from EPRs and EHRs to

cancer registry and death data was

employed as an example.

+ The fourth and final scenario was

the total replacement of current

public health data collections with

data extracted from EPRs and

EHRs.

Some informants reformulated these

four scenarios. One informant described

the four scenarios as a continuum, from

linkage to supplementation to

replacement; another described the

scenarios as an evolutionary process,

with supplementation leading to ongoing

or batch linkage, and linkage leading to

replacement. Other informants offered

additional scenarios, such as

retrospective use for population health

monitoring and research of EPR and

EHR data held in electronic vaults; use

of EPRs and EHRs to generate entirely

new data collections; and production of

data and analyses from current data

collections more rapidly than presently

or with much improved case

ascertainment.

Most interviewed experts combined

the two scenarios of use of EPRs and

EHRs as an additional data source for

current data collections and as a source

of supplementing current data

collections. These scenarios were

typically described as realistic,

especially for reportable diseases and

registries, and administrative health data.

One informant described

supplementation of current laboratory,

communicable disease, and

immunization registration data by EPRs

and EHRs as ‘‘trivial’’ examples, and

emphasized that supplementation for

asthma, diabetes, and cancer registries

would prove more challenging, as well

as for varied performance monitoring

such as the Health Plan and Employer

Data Information Set (HEDIS). Another

informant envisioned drilling down into

EPRs and EHRs to answer specific

research questions, especially after

initial issues around patient consent

were successfully addressed. Another

informant doubted that EPRs would

prove especially useful for retrospective

research, but would be helpful in

developing prospective protocols in

which clinicians might be prompted to
Page 52 [ Series 2, No. 143

gather specific data for individual

research studies.

A scenario of ongoing linkage of

current population health monitoring

data collections with data derived from

electronic patient records and electronic

health records was viewed with more

skepticism. ‘‘Real time’’ linkage was

rejected by an informant as not likely to

occur. Periodic linkages were regarded

as more likely. One informant pointed

out that large scale ongoing linkage

would be feasible only if facilitated by a

national patient identifier, stressing that

de-duplication of clinical data would

prove a major impediment.

A scenario of total replacement of

current population health monitoring

data collections with data derived from

EPRs and EHRs met with mixed

reactions from informants. Informants

differentiated the likelihood of a total

replacement scenario based on the type

of data collection. On the one hand,

replacement was described by some

informants as already widely occurring

in states for reportable laboratory data,

and on a more limited basis for

laboratory-based syndromic surveillance

and physician reportable disease data.

On the other hand, replacement of

population-based surveys by data

derived from EPRs and EHRs was

generally dismissed as impossible. Total

replacement of current population health

monitoring data collections was viewed

by most informants as unrealistic or, in

the words of one informant, as ‘‘science

fiction.’’ One informant envisioned

replacement as ultimately occurring for

those population health data currently

derived from clinical settings on a

‘‘bottom up’’ basis starting with

individual communities, but as much

less likely to occur on a national basis.

Additionally, replacement was viewed

by key informants as dependent upon

the universality of EPRs and EHRs,

resolution of privacy and clinical data

quality issues, use of structured

information entry into EPRs and EHRs

and the existence of improved natural

language processors, and widespread

implementation of EPR and EHR

standards with dual utility for clinical

and population health data.

Constraints

U.S. healthcare system

Fragmentation and competition

within the U.S. healthcare system were

cited by several informants as a major

constraint on the eventual development

and use of electronic patient records and

electronic health records for population

monitoring and research. As one

informant indicated, we ‘‘need to

recognize the reality of the U.S.

healthcare industry.’’ Another informant

indicated that drivers for the

development of EPRs and EHRs and are

so different than drivers for population

health in the market-driven U.S.

healthcare system that ‘‘there is no

intersection right now.’’ Among the

drivers for EPRs and EHRs listed by

informants were healthcare efficiency,

quality, costs, and safety, rather than

population health. Fragmentation and

competition within the U.S. healthcare

system were viewed by informants as

leading to two additional constraints on

the eventual use of EPRs and EHRs for

population health monitoring and

research: first, the lack of unique

national or regional patient identifiers;

and second, lack of a full set of

standards for EPRs and EHRs that could

simultaneously serve both clinical and

population health purposes.

U.S. public health

One informant indicated that ‘‘the

real issue isn’t technical, but public

health’s priorities.’’ In almost identical

language, several informants emphasized

that it was essential for ‘‘public health

to sit at the table’’ in cooperation with

the private healthcare sector in planning

activities fostering EHRs, such as

Regional Health Information

Organizations (RHIOs). Public health

representatives need to ‘‘stand firm,’’

‘‘raise their voice,’’ and ensure that

‘‘public health isn’t an afterthought.’’ At

the same time, the same informants

stressed that the mind set of public

health professionals also act as a

constraint in using EHRs for population

health monitoring and research. For

example, one informant pointed out that

public health ‘‘takes the healthcare

system for granted,’’ ‘‘needs to start

working within the context of

healthcare,’’ and needs to ‘‘accept health

system priorities.’’ Another informant

argued that ‘‘public health needs to stop

whining and develop a ‘sell’ of its

utility’’ for RHIOs [Regional Health

Information Organizations], EPRs, and

EHRs. Public health, a third informant

maintained, ‘‘hasn’t crossed boundaries

well’’ and ‘‘doesn’t know what it

doesn’t know.’’

Some informants pointed out that

public health needs to become more

flexible in dealing with the healthcare

system. According to an informant, one

aspect of such flexibility is a willingness

on the part of public health to modify

its data collection for population health

through ‘‘tapping into existing hospital

operations’’; the example provided was

the current existence of two separate

data collection streams from hospitals

for births and deaths. Other experts

pointed to another aspect of needed

flexibility: ‘‘if data are not perfect for

its needs, public health won’t use it.’’ Of

particular importance here, another

informant indicated, would be a

willingness for public health to adjust to

the ongoing use of dual data collection

streams for population health

monitoring, with one data collection

stream based upon EPRs or EHRs and

another data collection stream for the

same data collection based upon current

data collection streams.

Limitations of electronic patient

records and electronic health

records

As with informants in Australia,

Canada, England, and New Zealand,

some U.S. key informants discussed the

limitations of electronic patient records

and electronic health records in terms of

the constraints on their potential use for

population health monitoring and

research. One U.S. informant maintained

that EPRs and EHRs have generated

‘‘far more enthusiasm than justified’’ in

discussions of their potential for

population health monitoring and

research. Another informant indicated

that if standards are not developed for

EPRs or EHRs, then their uses for

population health monitoring and
Series

2, No. 143[ Page 53

research would be solely through governmental financing in other

abstracts rather than ongoing automated countries.

extracts.A related standards issue, as

with informants in other countries,

related to perceived limitations of

current clinical standards for population

health information. For example, an

informant cautioned that the ‘‘technology might not be ready for

prime time,’’ and emphasized that any

decreases in the timeliness of population

health monitoring due to use of EPRs

and EHRs would be unacceptable.

Also as with informants in other

countries, some U.S. informants

questioned whether the data quality of

electronic patient records and electronic

health records could support population

health monitoring and research. An

informant referred to the‘‘dirty little

secret of EPRs that nobody talks about

out loud or in the literature, that they

are now not complete and are

haphazard, with data entered by

clinicians ona convenience basis.’’ Both

missing data in EPRs and EHRs as well

as free text entry were earmarked as

constraints on their use for population

health monitoring and research. Finally,

and again echoing comments made by

some experts in other countries, U.S.

informants questioned whether current

public health methodologies were

capable of analyzing the huge volume of

data that would be generated by EPRs

and EHRs. Technology

, political will, and

financing

Any limitations of electronic patient

records and electronic health records

were viewed by an informant as less

important than constraints resulting from

the perceived lack of political will to

take the steps necessary to maximize the

potential of EPRs and EHRs for

population health monitoring and

control. Several key informants

indicated that the financing needed so

that EPRs and EHRs could contribute to

population health monitoring and

research is insufficiently discussed. Any

such financing in the U.S., it was

pointed out, is now dependent upon

grants.A third informant unfavorably

compared current U.S. governmental

expenditures for EPRs and EHRs to
Page 54 [ Series 2, No. 143

Chapter 7.

Fundamental Issues in

the Relationship of

National Strategies for

Electronic Health

Records to Population

Health Monitoring and

Research

Previous chapters of this report

provided overviews of national

strategies for electronic health

records and their potential for

population health monitoring and

research in Australia, Canada, England,

and New Zealand, based on publicly

available reports, World Wide Web sites,

presentations, and literature (Chapter 4);

reported themes about the potential

contribution of electronic health records

to population health monitoring and

research, based on interviews with 65

experts in the same four countries

(Chapter 5); and also reported on

themes about the potential contribution

of electronic patient records and

electronic health records to population

health monitoring and research in the

U.S., based on interviews with 31 U.S.

experts (Chapter 6). In contrast, this

chapter represents the author’s analysis

of issues affecting the potential

contribution of national health

information infrastructures, and

especially electronic health records, to

population health monitoring and

research. In this chapter, the author

discusses definitional issues, numerator

and denominator issues, overarching

issues, and success factors for

maximizing the potential contribution of

national health information

infrastructures to population health

monitoring and research.

Definitional Issues

As indicated in Chapter 1:

Introduction, health statistics are defined

as ‘‘numerical data that characterize the

health of a population and the influences

that affect its health’’ (Parrish,

Friedman, and Hunter 2005, 3).

Population health monitoring, defined

earlier ‘‘as the collection and analysis of

data to detect changes in the

population’s health and influences on

the population’s health,’’ produces the

data that typically constitute the basis

for health statistics. These data include

reports of notifiable diseases and

registries, population-based surveys, and

administrative health data. Health

statistics, in turn, provide the basis for

much of population health research.

As pointed out in Chapter 1, three

necessary conditions must be met in

order to characterize the health of a

population through health statistics.

First, numerator data must exist about a

health event, condition, disease,

functional health status, well-being, or

an influence on population health.

Second, denominator data must exist

that describe the population in terms of

its size, its geographic location, and its

basic demographic characteristics. Third

and finally, a match must exist between

the numerator and the denominator; in

other words, the numerator must be

drawn from the population denominator.

A known numerator and a known

denominator are both necessary to yield

population-based health statistics. The

known denominator should typically be

defined at some geographic level, and

include either (a) the total population in

the geographic area, or (b) a sample of

the total population that can be

generalized to the total population in

known and quantifiable ways, or (c) a

specified sub-sample of the total

population, with numerator data relating

to the same specified sub-sample of the

total population. The need for a

population-based denominator

distinguishes health statistics from some

clinical research, from some health

services research, and from some

population health monitoring for the

purposes of immediate public health

interventions, such as case-based

surveillance.

Numerator and

Denominator Issues

In order to generate populationbased health statistics, electronic patient

records and electronic health records

must yield accurate numerator data.

Matching geographically-based

population denominator data must also

be available.

Penetration of electronic health

records

In order to generate useable

numerator data, electronic health records

must either penetrate an entire

geographically-based population, or a

truly random subset of that population

with known characteristics, or a

non-random subset of that population

with known characteristics. If electronic

health records have not penetrated the

entire geographically-based population,

then the subset of the population with

electronic health records and known

characteristics must be linked with a

population denominator with known

characteristics. In order to generate

health statistics reflecting at least some

elements of population health and the

influences on population health (see

Figure 1.1), electronic health records

also must either yield numerator data

across the entire spectrum of population

health (such as disease, functional

status, and well-being) and healthcare

(such as primary care, acute hospital

care, home care, and long-term care), or

must yield numerator data for a specific

and definable subset of population

health or the spectrum of healthcare.

Wide penetration of electronic patient

records and electronic health records

may introduce new methodological

quandaries for linkages of numerator

data derived from electronic health

records with numerator data derived

from other data collection streams, and

for linkages of numerator data derived

from electronic health records with

denominator data derived from other

data collection streams.

Data quality

As Roberts and Hanson indicate,

‘‘while electronic health records will

impose more discipline on how

information is recorded, they will not be

a panacea for poor recording practices’’

(Roberts and Hanson 2003 Sep 15, 278).

Data recorded in electronic patient
Series 2, No. 143 [ Page 55

records and electronic health records

may or may not meet standards for data

quality in population health monitoring.

The quality of data in electronic patient

records and electronic health records

may vary among healthcare providers,

among healthcare provider sites, among

healthcare institutions, among healthcare

sectors, and among different electronic

patient records and electronic health

records. If electronic patient records and

electronic health records are to yield

numerator and denominator data

appropriate for health statistics, then

those numerator and denominator data

must meet the same professional

standards of validity and reliability as

currently met by population health

monitoring data sets such as births,

deaths, cancer incidence, hospital

discharges, and population-based

surveys. Data quality checks for these

data sets typically include data entry

field checks, field out of range checks,

consistency checks to identify discordant

data in two or more fields, and

healthcare provider- or healthcare

provider institution-level checks to

identify artifactual errors (such as

inappropriate use of certain codes in

individual healthcare institutions). Also

typically, follow-ups occur on

questionable data items by the county or

state health department receiving the

data; these follow-ups can be automated

as well as conducted through

person-to-person contact.

Data completeness

Numerator and denominator data

derived from electronic patient records

and electronic health records must meet

the same measurable standards for

completeness as currently met by

standard population health monitoring

data sets. These standards now vary

from data set to data set, even for

conceptually similar data elements (such

as education or other demographic

variables) that exist in several data sets.

Standards for completeness are of two

types. One type of standards for

completeness pertains to denominator

completeness. Data derived from

electronic patient records and electronic

health records must include all members

of the specified geographically-based

subpopulation or statistically represent

the subpopulation. Incomplete

penetration of electronic patient records

and electronic health records can

adversely affect denominator

completeness, as can the presence of

uninsured individuals and individuals

who fail to use healthcare services in

the specified subpopulation. A second

type of standards for completeness

pertains to numerator completeness,

such as the completeness of individual

items in the data set.

Maximizing data quality and

completeness in electronic

health records

Various authors have emphasized

that recognizing and respecting clinical

work flow requirements are essential if

electronic patient records and electronic

health records are to be successfully

implemented (for example, see Baron et

al. 2005 Aug; Brookstone and Braziller

2003; James 2005 Jan 19; Leonard

2004; Sprague 2004; Scott et al. 2005).

Experts interviewed in the five countries

included in this project stressed that

meeting clinical work flow requirements

are even more important if electronic

patient records and electronic health

records are to contribute to population

health monitoring and research. Most

basically, it is important to recognize

that the collection of data for population

monitoring and research purposes—

‘‘indirect patient care’’—is explicitly

secondary to the primary clinical ‘‘direct

patient care’’ purposes of electronic

patient records and electronic health

records in national strategies for

electronic patient records and electronic

health records.6

In order to maximize the quality

and completeness of data collected for

secondary ‘‘indirect patient care’’

purposes through electronic patient

records and electronic health records,

one or more of three conditions must be

met. The first condition is that the

collection of data for secondary

6

David Pencheon has stressed the importance of

differentiating direct patient care from indirect

patient care when discussing the uses of electronic

patient records and electronic health records for

population health monitoring and research

(Pencheon D 2005 Nov 20).

purposes would provide a demonstrable

clinical return to the physician for the

treatment of individual patients (for

example, see: Hillestad et al. 2005

Sep/Oct, 1110–1112). For example, this

condition could be met if data collected

on a patient for population health

monitoring purposes were then clearly

included in a clinical decision support

system used for the care of the

individual patient. Meeting this

condition may be especially difficult for

all data elements in an ongoing

population health monitoring data

collection, because many data elements

are collected both to continue time

trends and to enable future analyses, the

purposes of which may not have been

explicitly defined to the clinician or

healthcare institution providing the data.

The second condition is that the

collection of data for secondary

purposes would be totally transparent to

the clinician. For example, a cardiovascular risk assessment system now in

use in New Zealand requires the

clinician to enter patient-specific data

needed for assessing patient risk, which

should be collected during regularly

scheduled examinations or other visits.

These data could then be aggregated at

the Primary Health Organisation,

District Health Board, or national level

for population health monitoring, still

retaining the patient as the unit of

analysis. The third condition is that the

collection of specific data for secondary

purposes is a contractual responsibility

for physician reimbursement or for

reimbursement-related physician

performance review. Among the

informants interviewed for this project, a

consensus exists that collection of data

for population health monitoring and

research through electronic patient

records and EHRs that does not meet

any of these three conditions will result

in poor data quality and incomplete

data.

Consent

Patient consent for the entry of their

data into electronic patient records and

electronic health records is an important

ingredient in data completeness. The

most basic issue is whether patients

should control (a) what data are entered
Page 56 [ Series 2, No. 143

into electronic patient records and

electronic health records, (b) the uses of

those data, and (c) access to those data

for clinical care, healthcare

management, and other purposes,

including population health monitoring

and research. As implied in Australia’s

HealthConnect Business Architecture

version 1.9, patients would have the

right to opt in or out of electronic

patient records and electronic health

records overall, and also have the right

to refuse entry of data for any individual

health event, healthcare encounter,

health condition, or disease, as well as

to refuse transfer of data to any

provider, to a HealthConnect Record

System, or to the National Data Store

(HealthConnect Program Office 2004a

Nov). The HealthConnect Business

Architecture version 1.9 also indicates

that physicians would have the right to

refuse entry of data for their patients

into electronic patient records and

electronic health records (HealthConnect

Program Office 2004a Nov). In contrast,

current English NHS policies indicate

that physicians must enter appropriate

patient data into electronic patient

records and electronic health records,

but that patients could opt for the

utilization of a ‘‘sealed envelope’’ for

any identifiable data that they do not

want shared with other clinicians;

similarly, Canada Health Infoway is

considering the use of ‘‘masking’’ of

identifiable data held in electronic

patient records and electronic health

records at the patient’s request. Patient

control of what data are to be entered

into electronic patient records and

electronic health records and later used

for population health monitoring and

research purposes will adversely affect

the quality and completeness of both

numerator and denominator data. Patient

control over data entry into electronic

patient records and electronic health

records may be a surmountable problem

if the control is only over identifiable

data, and if techniques exist for tracking

unique patients in de-identified data,

such as through the encrypted health

identifiers employed in England’s

Secondary Uses Service.

Unique patient identification

Some form of unique identification

of individual patients is necessary if

electronic patient records and electronic

health records are to provide data for

population health monitoring and

research. Unique identification enables a

patient-centric view of population

health, in which individual patients as

members of the population are counted

rather than just counting individual

health events or the incidence or

prevalence of individual diseases.

Unique identification also enables

patient-centric linkage of data from

different data collection streams and

patient-centric linkage of data over-time

within the same data set. If electronic

patient records and electronic health

records do not include unique

identification but do include geographic

identifiers for patient residence, then any

linkage would occur at a geographic

level (such as city, town, postal code, or

neighborhood, depending on the

geographic identifier). Unique

identification of individual patients is

necessary for the specified geographic

level of interest for the specified

population. For example, unique

identification could occur at the county

level, if population health monitoring

and health statistics were to be

generated at the county level and

sub-county level. Unique identification

of individual patients could occur

through any of several different

mechanisms. The NHS number in

England and the National Health Index

in New Zealand represent unique patient

identification numbering systems that

are continuously de-duplicated.

Alternatively, unique identification of

individual patients could also occur

through algorithmic probabilistic or

deterministic linkage of a specified set

of identifier variables, used across

different data collection streams, all

using the same identifier variables for

patient authentication, with the same

standard definitions and meeting the

same data standards. With a larger the

number of patients, de-duplication of the

results of ongoing linkage of patient

identifier variables will obviously prove

more challenging. Finally, unique

identification of individual patients

could also occur through a master

patient index, which would essentially

consist of a ‘‘white pages’’ listing all

patients with all of their associated

healthcare unique identifiers, enabling

each local healthcare provider or

provider site to maintain its own patient

identification system. As with

algorithmic linkage of a series of patient

identifier variables, an accurate master

patient index will prove more

challenging to maintain with greater

numbers of patients.

It is also important to recognize that

schemes for uniquely identifying

patients differ from schemes for

uniquely identifying members of a

population. To the extent that health

statistics extend beyond health events

treated through the healthcare system,

unique identification of patients rather

than unique identification of each person

in the population may limit the

development of population-based health

statistics.

Known denominator

characteristics

As discussed earlier in this chapter,

data derived from electronic patient

records and electronic health records can

only be useful for population health

monitoring and research if they are

associated with a geographically-based

population denominator with known

characteristics. Known characteristics

include any demographic variables that

would be used for the purposes of

stratifying or analyzing the population,

such as age, sex, race, ethnicity, and

education. Denominator data could be

derived from the electronic patient

records or electronic health records

themselves, if they pertain to an entire

population. Alternatively, matching

population denominator data could be

derived from a population census, again

assuming that the numerator data

derived from the electronic patient

records or electronic health records is a

random representation of that population

or of a known sub-sample of that

population. Finally, a matching

population denominator and basic

demographic descriptors could also be

derived from some form of a

population-based registry of patients,
Series 2, No. 143 [ Page 57

such as England’s Personal Spine

Demographics Service maintained by

the NHS or New Zealand’s National

Health Index.

Overarching Issues

Even if electronic patient records

and electronic health records were to

successfully address issues relating to

data quality, data completeness, consent,

unique personal identification, and

known denominator characteristics,

several overarching issues remain that

may limit their utility for population

health monitoring and research.

Population health and

healthcare

As has been repeatedly indicated in

the literature, healthcare is only one of

many influences on population health

(Evans and Stoddart 1990; Evans and

Stoddart 2003; Friedman and Starfield

2003 Mar; Parrish, Friedman, and

Hunter 2005). Consequently, data

collected through electronic patient

records and electronic health records in

healthcare settings, even if those

healthcare settings cover the full

spectrum of the healthcare sector, will

not adequately represent the full range

of population health and the influences

on population health. Even if all

numerator and denominator issues

related to electronic patient records and

electronic health records were

successfully addressed, electronic patient

records and electronic health records

will still have at least two limitations in

their utility for population health

monitoring and research. First, all types

of information pertinent to population

health will not be included in medical

records, including electronic patient

records and electronic health records.

For example, as experts interviewed in

the five countries frequently pointed out,

population-based surveys typically

include many data items unlikely to be

captured in electronic patient records

and electronic health records, thus

obviating the possibility of the

replacement of population-based surveys

by electronic patient records and

electronic health records. For example,

such typical survey items that may not

be included in electronic patient records

and electronic health records could

include standardized batteries of

questions relating to the patient’s

subjective perception health status,

mental health sick days, gun ownership,

and income. Second, all aspects of the

influences on population health will not

be captured in electronic patient records

and electronic health records; this is

especially true of influences that are

community attributes such as the built

environment and population-based

health programs, and influences that are

contextual such as the natural

environment, the cultural context, and

the political context (Parrish, Friedman,

and Hunter 2005, 18).

Structured data in electronic

patient records and electronic

health records

For the purposes of population

health monitoring and research and

generating health statistics, electronic

patient records and electronic health

records will only be useful if they

contain structured data. Those structured

data should include either (a) the most

preferable alternative of clinical code

sets with the codes necessary for

population health monitoring, or (b) the

less preferable alternative of clinical

code sets with direct mapping to the

required population health monitoring

variables and code sets (NHS

Information Authority 2002 Sep, 8).

Analysis

Another overarching issue is the

capacity of public health agencies and

population health researchers to cull

data from electronic patient records and

electronic health records. At a national

level, even in a nation such as England

with a population substantially smaller

than the U.S. population, electronic

patient records and electronic health

records will annually generate billions

of health events, prescriptions, test

orders, laboratory and test results, and

so forth. New technologies will be

needed for data storage, handling, and

use. In order to utilize electronic patient

records and electronic health records for

population health monitoring and

research, public health will need new

technologies and methodologies that will

enable it to cull those data to derive

what it needs in the format in which it

needs it.

Cultural changes

Informants pointed to cultural

changes that need to occur if electronic

patient records and electronic health

records are to be used for population

health monitoring and research,

including culture changes among public

health practitioners, among clinicians,

and among the public. Public health

professionals will need to adapt their

current techniques for data analysis and

will also need to adapt to new types of

data. Unless and until complete

population coverage of electronic health

records occurs within a geographic area,

public health professionals will need to

explore means of utilizing data from

electronic patient records and electronic

health records as an additional data

source to those currently in use.

Similarly, unless and until a fully

automated relationship exists between

electronic patient records and EHRs,

allowing automatic extraction of data

from electronic patient records and

electronic health records for population

health monitoring and statistical

processing of those data, public health

professionals will also need to adapt

their culture to an even more complex

set of data collection streams than

currently exists (Hunter, Friedman, and

Parrish 2005). As indicated earlier,

collection of data through electronic

patient records and electronic health

records for population monitoring and

research may also require culture change

on the part of clinicians, currently

accustomed to collection of more

limited data for clinical purposes (for

example, see: Hendy et al. 2005;

Sprague 2004, 7–8). Based on the

interviews conducted with experts in the

five countries, it should also be noted

that minimal experience and minimal

professional literature currently exists

from which to assess the willingness of

clinicians to collect the needed data.

Finally, cultural change on the part of

the public will also be necessary, if the

public is to accept the secondary use of
Page 58 [ Series 2, No. 143

clinical data collected through electronic

patient records and electronic health

records for the purposes of population

health monitoring and research (for

example, see Lewin Group 2005, 5,

16–17).

Incentives for adoption and use

of electronic patient records

and electronic health records

A growing literature has pointed to

the need to provide incentives to

stimulate clinician adoption and use of

electronic patient records and electronic

health records (Benson 2002; Bower

2005; Commission on System

Interoperability 2005; Connecting for

Health 2004 Oct; Healthcare

Information and Management Systems

Society 2005 Feb; Miller and Sim 2004

Mar/Apr). In addition, a growing

literature has also emphasized the need

for better alignment of financial and

other incentives for adoption and use of

electronic patient records and electronic

health records, such as incentives for

maximizing healthcare quality, reducing

adverse events and medical errors,

enhancing healthcare provider revenue,

maximizing healthcare efficiencies, and

controlling costs (Economist 2005 Apr

30; Goodman 2005 Sep/Oct; Middleton

2005 Sep/Oct; Miller et al. 2005

Sep/Oct). It is important to realize that

issues of providing and aligning

incentives for the adoption and use of

electronic patient records and electronic

health records for the secondary

purposes of population health

monitoring and research, and especially

for generating health statistics, may be

even more daunting than providing and

aligning incentives for the primary uses

of clinical care.

Transformative limits of

electronic patient records and

electronic health records

No single answer can be provided

to questions about the potential

contribution of electronic patient records

and electronic health records for

population health monitoring and

research. Answers will depend upon

many factors. One factor is the

particular data collection stream, and

whether the data collection stream

includes reportable diseases and

registries, administrative health data, or

population-based surveys. A second

factor that is whether the potential

contribution of electronic patient records

and electronic health records to

population health monitoring and

research is envisioned as supplementing

current data collections with electronic

patient records and electronic health

records as an additional data source, or

as an ongoing linkage of electronic

patient records and electronic health

records with current data collections, or

as a replacement of current data

collections with data derived from

electronic patient records and electronic

health records. While supplementation

of current population health data

collections with data derived from

electronic patient records and electronic

health records may be realistic goals,

total replacement of all current

population health data collections and

automated extraction of data from

electronic patient records and electronic

health records may not. In considering

the potential contribution of electronic

patient records and electronic health

records to population health monitoring

and research, a third factor is whether

electronic patient records and electronic

health records meet current data quality

and completeness standards for

population health data collections. In the

U.S., with its fragmented healthcare

system, its relatively high rate of

individuals without health insurance

coverage, and its likely fragmented

implementation of electronic patient

records and electronic health records

dependent upon individual health

providers and individual geographies,

questions of the potential utility of

electronic patient records and electronic

health records for population health

monitoring and research will probably

be answered through a series of diseaseand condition-specific data collections in

individual geographies. A fourth factor,

integrally related to the third factor, is

whether population-based

implementation of electronic health

records lead to new criteria for data

quality and completeness of population

health monitoring, different from those

currently employed.

As indicated by several interviewed

experts, it is also important to recognize

that electronic patient records and

electronic health records may yield

entirely new data for population health

monitoring and research, on topics not

now adequately covered by current data

collections. For example, this could

include population-based measurement

of chronic disease morbidity, disease

prevalence, functional status, and

wellness, as well as expanded

population-based registries for chronic

disease and health conditions (for

example, see: Booz, Allen, Hamilton

2005 Mar).

Success Factors

This report centers on an analysis of

five countries, based on a combination

of reviewing written materials and

interviewing expert informants. An

analysis of only five countries cannot

yield a definitive or quantitative

exploration of factors that lead to or are

associated with the successful use of

electronic health records for population

health monitoring and research. Given

how germinal and varied is the

development, implementation, and

penetration of electronic health records

in these five countries, identifying

success factors becomes even more

problematic. For example, the current

penetration of electronic patient records

into general practice in New Zealand is

estimated at almost 100%, compared to

17% in the U.S. (Didham, Dovey, and

Barker 2005; Burt and Hing 2005).

Finally, of the five investigated

countries, only England has extensively

planned at the national level for the

derivation of population health

monitoring from electronic health

records, making the identification of

success factors from this analysis even

more perilous.

While a definitive analysis

identifying the factors leading to the

successful use of electronic health

records for population health monitoring

and research is not now possible given

the parameters of this project and the

current status of electronic health

records in the investigated countries, it

is nonetheless possible to speculate

cautiously on those success factors. The
Series 2, No. 143 [ Page 59

following brief section provides this

preliminary speculation; by its nature,

this speculation is neither right nor

wrong, but is intended to stimulate

further discussion and debate. Success

factors are divided into three categories:

enabling factors, which increase the

likelihood of the successful use of

electronic health records for population

health monitoring and research;

threshold factors, without which the

successful use of electronic health

records for population health monitoring

and research may fail; and, with

apologies to Malcolm Gladwell, tipping

factors, which ultimately will maximize

the potential for the successful use of

shared EHRs for population health

monitoring and research (Gladwell

2000).

Enabling factors

Enabling factors that increase the

likelihood of the successful use of

electronic health records for population

health monitoring and research include

health system enablers and health

information system enablers. Health

system enabling factors are at least

fourfold: first, greater funding of the

healthcare system by government;

second, a low percentage of uninsured

individuals in the population; third, a

higher ratio of general practitioners to

specialists; and fourth, greater central

coordination of the health system.

Health information system enabling

factors are at least fourfold: first, a

closer relationship between the provision

of healthcare information from data

sources for clinical and administrative

purposes and the conduct of population

health monitoring; second, reduced

fragmentation among population health

monitoring data collections (Public

Health Data Standards Consortium

2004); third, the existence of clinician

incentives for adopting and using

electronic patient records and electronic

health records; and fourth, cultural

changes on the part of clinicians

supporting their collection of data of

data for population health monitoring

through electronic patient records and

electronic health records (for example,

see Bower 2005, xix, 86–88).

Threshold factors

Threshold factors, without which

the successful use of electronic health

records for population health monitoring

and research may fail, include business

threshold factors and systems threshold

factors. A business threshold factor is

the explicit inclusion of population

health monitoring and research as

integral components of the national

strategy for electronic health records,

and in particular the national mission for

electronic health records, goals, plans

and pilot or test implementations.

System threshold factors are at least

threefold. First, the national strategy for

electronic health records must include

the integrated electronic provision of

data and integrated data flows from

diverse healthcare sources for clinical,

reimbursement, administrative, and

population health monitoring purposes.

Second, the national strategy for

electronic health records must include

the use of structured data entry for

electronic patient records and electronic

health records and the development of

data standards useful for clinical,

administrative, and population health

monitoring purposes. Third, as indicated

in Emerging Dataset Issues: Enabling

the Derivation of ‘Business’ Information

from Electronic Records; ‘‘to generate

consistent information beyond that

needed for direct patient care requires

consensus regarding. . . clear definitions

of the data required to be collected or

derived, the rules for the derivation of

secondary information from primary

[EPR and electronic health record]

data. . ., and knowledge of electronic

record design so that standards for

derivation can be consistently applied by

system developers and particularly those

writing extraction routines’’ (NHS

Information Authority 2002 Sep, 6).

Fourth, the national strategy for

electronic health records must include

the development of some form of

unique patient identification and the use

of that unique patient identification,

encrypted or unencrypted, for all

electronic provision of data. Unique

patient identification could occur

through a variety of mechanisms,

including unique patient identification

numbering systems for the specified

geographic level of interest, or through

algorithmic probabilistic or deterministic

linkage of a set of identifier variables,

or through a master patient index.

Tipping factors

Three tipping factors can be

identified, which may ultimately

maximize the potential for the

successful use of electronic health

records for population health monitoring

and research. The first tipping factor is a

form of reimbursement for physicians

that could mandate the nature, contents,

and use of electronic health records,

such as salary-based reimbursement or

other systems where physicians are

required to follow established uniform

recording protocols. The second tipping

factor is the mandated implementation

of electronic health records with

mandated standards. Of course, these

tipping factors should be viewed within

the context of the political and health

systems of individual nations. While a

predominantly single payer system, as in

England, may arguably increase the

likelihood of successful use of electronic

health records for population health

monitoring, it does not follow that the

lack of a single payer system makes use

of electronic health records for

population health monitoring impossible.

Similarly, while mandated

implementation of electronic health

records may arguably increase the

likelihood of successful use of electronic

health records for population health

monitoring, it does not follow that other

approaches to implementation of

electronic health records—such as

business models providing incentives for

implementation—will make use of

electronic health records for population

health monitoring impossible. The third

tipping factor is the confluence of strong

governmental leadership in the

healthcare sector and greater

governmental coordination or control of

the healthcare sector, which may be

promoted through the existence of a

predominant payer for healthcare or a

predominantly single payer system.
Page 60 [ Series 2, No. 143

Conclusions

National strategies for electronic

health records and their supporting

national health information

infrastructures should be viewed as

nested within a series of overlapping

contexts. One context is the nation’s

health and healthcare system. A second

context is the nation’s governmental and

political system, structures, and policies.

A third context is the nation’s market

system, especially as it relates to the

population’s health and the healthcare

system. National strategies for electronic

health records simultaneously reflect the

nation’s health and healthcare system,

the nation’s governmental and political

system, and the nation’s market system.

National strategies for electronic

health records constitute both

(a) technical decisions about

architecture, information and

communications technology, and

standards, as well as (b) political

decisions. The political decisions

affecting national strategies for

electronic health records can change,

and those political decisions will affect

the technical decisions. Political

decisions affecting national strategies for

electronic health records may be most

likely to change during relatively early

stages of national conceptualization,

planning, and investments.

Australian, Canadian, English, and

New Zealand national strategies for

electronic health records and the

supporting national health information

infrastructures were reviewed for this

report. In the four countries investigated,

population health monitoring and

research—especially population health

monitoring to generate population-based

health statistics—were clearly and

explicitly secondary uses for electronic

health records. England’s National

Health Service has most thoroughly

explored and planned for the inclusion

of population health monitoring,

including for generating health statistics

and supporting population health

research, as part of its national strategy

for electronic health records. Canada

Health Infoway is devoting substantial

resources to incorporating

communicable disease surveillance

within the Canadian national strategy for

electronic health records. Nonetheless,

little consensus seems to exist within or

across these nations about the concepts,

contents, or methods of how national

strategies for electronic health records

can or should fully support population

health monitoring for producing health

statistics.

In 2006, it is still too early to

ascertain the actual potential of national

strategies for electronic health records

for population health monitoring and

research. With the exception of England,

the development of those national

strategies are in germinal stages; even in

England, the implementation of the

national strategy is in an early stage. An

evidence base does not exist from which

to judge how successful national

strategies for electronic health records

can be in supporting population health

monitoring and research (see similar but

more general points in: Atherley 2005;

Bend 2004). As indicated in 2002 by the

National Health Service Information

Authority, ‘‘data needed to support

secondary information purposes. . .

should be derivable from data that is

collected as part of the operational care

process. . . However, critical aspects of

this hypothesis remain operationally

untested’’ (NHS Information Authority

2002 Sep, 3–4).
Series 2, No. 143 [ Page 61

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Ltd.

Á Tranberg H, Rashbass J (2004). Medical

records use and abuse. Oxford (UK) and San

Francisco (CA): Radcliffe Medical Press.

Á U.S. Department of Health and Human

Services Indian Health Service [hp]. CRS

(Clinical Reporting System, formerly known

as GPRA+) [updated 2005 Mar 31;

cited 2005 May 1]. Available from:

http://www.ihs.gov/cio/crs/.

Á U.S. Department of Health and Human

Services Indian Health Service [hp].

IHS-EHR electronic health record [updated

2005 Apr 8; cited 2005 May 2]. Available

from: http://www.ihs.gov/cio/ehr/.

Á U.S. Department of Health and Human

Services (2003 Feb 10). Indian Health

Service FY 2002 Government Performance

and Results Act Executive Report.

Á Utah Health Information Network [hp]

(cited 2005 Jul 8]. Available from:

http://www.uhin.com/.

Á Vancouver Island Health Authority (2004

May 25). Primary health care renewal,

Electronic Medical Summary Project (e-MS),

Master project plan: phase 2, Version 1.0.

Victoria BA (CA): Ministry of Health

Services.

Á Walker P (No Date). Data protection and

confidentiality: legally compliant research.

London (UK): NHS National Programme for

Information Technology.

Á Walker P (2005 Mar 3). RE: Spine and

patient consent. E-mail to Paul Thornton.

Á Wanless D (2002 Apr). Securing our

future: taking a long-term view. Final report.

London (UK): The Public Enquiry Unit, HM

Treasury.

Á Wark C (2004 Nov 9). VistA Office EHR.

Á Wells S, Jackson R (2005 Mar 1). Online

management of cardiovascular risk in New

Zealand with PREDICTTM—getting evidence

to the ‘‘moment of care’’. Health Care and

Informatics Review Online.

Á Wiesenthal AM (2003 fall). Transitions of

clinical information systems. The Permanente

Journal 7(4):59–61.

Á World Health Organization (2005) [hp].

The world health report 2005—make

every mother and child count, statistical

annex. Geneva: World Health

Organization; 149–181. Available from:

http://www.who.int/whr/2005/annexes-en.pdf

[cited 2005 Sep 12].

Á Wyatt JC, Liu JLY (2002). Basic concepts

in medical informatics. Journal of

Epidemiology and Community Health

56:808–812.

Á Zeidenberg J (2004 Feb). Alberta expands

its e-Health network province-wide.

Canadian Healthcare Technology. Available

from: http://www.canhealth.com/feb04.html

[cited 2004 Dec 7].
Series 2, No. 143 [ Page 71

Acronyms and Glossary

Acronyms Glossary

Acronym Term or organization Term Definition

AHRQ Agency for Healthcare Quality and Research (U.S.)

CIHI Canadian Institute for Health Information

CRS Clinical Reporting System (Indian Health Service, U.S.)

ECID Electronic health record infostructure client identifier

(Canada)

EHRElectronic health record

EHRsElectronic health records

EPRElectronic patient record

EPRsElectronic patient records

ERDIPElectronic Record Development and Implementation

Programme (England)

FIDFederated identifier (Canada)

GPGeneral Practitioner

HEDISHealth Plan and Employer Data Informatin Set (U.S.)

IHSIndian Health Service (U.S.)

IHIEIndiana Health Information Exchange (U.S.)

InfowayCanada Health Infoway

INHSInland Northwest Health Services (U.S.)

MWSMedical Warning System (New Zealand)

NCVHSNational Committee on Vital and Health Statistics (U.S.)

NEHTANational E-Health Transition Authority (Australia)

NHINational Health Index (New Zealand)

NHIINational health information infrastructure

NHSNational Health Service (England)

NN4BNHS Numbers for Babies (England)

NPfITNational Programme for Information Technology

(England)

PHOPrimary Health Organisation (New Zealand)

RHIORegional Health Information Organization (U.S.)

SUSSecondary Uses Service (England)

UHINUtah Health Information Network (U.S.)

VHAVeterans Health Administration (U.S.)

VistAVeterans health information systems technology

architecture (U.S.)

WAVEWorking to Add Value through E-information

(New Zealand)

Denominator

Electronic health

record

Electronic patient

record

Health statistics

Numerator

Population health

Population health

monitoring

Population health

research

‘‘The lower portion of a fraction used to calculate a rate

or ratio. The population. . . at risk in the calculation of a

rate or ratio’’ (Last et al. 2001, 49). Denominators

represent the population in which the particular aspect of

population health is being measured. Population-based

health statistics require both a known numerator and a

known denominator.

Electronic repository of patient-centric data that are

identifiable, longitudinal and preferably life-long,

cross-provider, cross-provider site, and cross the

spectrum of healthcare, including primary care, acute

hospital care, long-term care, and home care

Electronic record of the periodic care provided mainly by

one institution

‘‘Numerical data that characterize the health of a

population and the influences that affect its health’’

(Parrish, Friedman, and Hunter 2005, 3)

‘‘The lower portion of a fraction used to calculate a rate

or ratio. The population. . . at risk in the calculation of a

rate or ratio’’ (Last et al. 2001, 126). Denominators

represent the population in which the particular aspect of

population health is being measured. Population-based

health statistics require both a known numerator and a

known denominator.

‘‘The health outcomes of a group of individuals, including

the distribution of such outcomes within the group’’

(Kindig and Stoddart 2003, p. 381). Population health

encompasses the level and distribution of disease,

functional status, and well-being within a group (Parrish,

Friedman, and Hunter 2005, 18).

The collection and analysis of data to detect and

describe changes in the population’s health and

influences on the population’s health

Research on population health or those factors that

affect population health
Page 72 [ Series 2, No. 143

Appendix 1. Structured Search Criteria

1. General Considerations for Structured Searches

a. All searches documented, with inclusion and exclusion criteria

b. Specified below are initial search algorithms. Due to the volume of material and the return rate of valuable material, the

search algorithms changed somewhat during searches for individual countries.

c. When search algorithms yield an unwieldy amount of material from the Web, additional exclusion criteria will be applied

i. PDF files only

ii. Web sites updated during the last year only

iii. English language only

2. Preliminary Search Algorithms

a. Search on ‘‘health information strategy’’ AND individual country

i. search within individual country results by ‘‘health statistics’’

ii. search within individual country results by ‘‘population health information’’

iii. search within results by ‘‘surveillance’’

b. Search on ‘‘health information infrastructure’’ AND individual country

i. search within individual country results by ‘‘health statistics’’

ii. search within individual country results by ‘‘population health information’’

iii. search within results by ‘‘surveillance’’

c. Search on ‘‘electronic health record’’ AND individual country

i. search within individual country results by ‘‘health statistics’’

ii. search within individual country results by ‘‘population health information’’

iii. search within results by ‘‘surveillance’’

d. Search on ‘‘electronic medical record’’ AND individual country

i. search within individual country results by ‘‘health statistics’’

ii. search within individual country results by ‘‘population health information’’

iii. search within results by ‘‘surveillance’’

e. Search on ‘‘health information network’’ AND individual country

i. search within individual country results by ‘‘health statistics’’

ii. search within individual country results by ‘‘population health information’’

III. search within results by ‘‘surveillance’’

3. Documentation

a. Record all websites

b. Record all search algorithms
Series 2, No. 143 [ Page 73

Appendix 2. Journals and Newsletters Reviewed

Australian and New Zealand Journal of Public Health

BMC Medical Informatics and Decision Making

British Medical Journal

E-Health Insider

E-Health Insider Primary Care

eHealth International

Electronic Healthcare

Guardian

Health Affairs

Health Care and Informatics Online

Health e-News

Health Informatics and Communications Canada

Health Informatics Journal

Health Information Management

HealthCare and Informatics Review Online

iHealth Beat

Journal of American Medical Informatics Association

Journal of Healthcare Information Management

Journal of Medical Internet Research

Selected articles in other journals and newsletters
Page 74 [ Series 2, No. 143

Appendix 3. Typical Interview Guide (English Expert)

Introduction and Background

1. Conducting project for U.S. Centers for Disease Control and Prevention/National Center for Health Statistics on potential

contribution of electronic health records and the developing U.S. national health information infrastructure to population

health monitoring and population-based health research. The emphasis within the project is on data and information used to

develop health statistics, such as registries, surveys, and administrative health data, rather than on data employed for rapid

case identification and outbreak investigations.

2. Including within the concept of a national health information infrastructure

a. Electronic health records and electronic patient records, comparable to National Care Records Service

b. Electronic connectivity, comparable to N3 and NHSNet

c. Electronic prescribing, comparable to Electronic Transmission of Prescriptions

d. Standards development

e. Other associated technologies and infrastructure components

3. Three phases of this project

a. Investigation of related developments in Australia, Canada, New Zealand, and the U.K. (England) through environmental

scans including

i. Web and peer-reviewed and trade literature

1) Reviewed National Programme for IT web pages relating to Secondary Uses Web pages

2) Reviewed NHS Information Authority web pages relating to the Dataset Development Programme and the

NHS-Wide Clearing Service

3) Read variety of NHS and DH reports relating to Information for Health, Building the Information Core,

Delivering 21st Century IT Support for the NHS, Secondary Uses Service Phasing and Migration Description

ii. Key informant interviews in each country with representatives of national and sub-national governments responsible

for development of national strategies for electronic health records and population health monitoring, researchers,

and clinicians

1) Just starting on England

2) Suggestions and contacts will be much appreciated

b. Investigation of related developments in the U.S., which also includes

i. Web and peer-reviewed and trade literature

ii. Key informant interviews

4. Purpose of key informant interviews

a. To obtain snapshots of current projects and activities that do or have potential of electronic health records and NHII

development to population health monitoring and research

b. To obtain feedback on key informant’s realistic assessment of the potential relationships between national strategies for

electronic health records and the NHII and population health monitoring and research, and what factors may facilitate or

impede the development of those relationships

Questions:

1. Would like to start by obtaining a better understanding of

a. Secondary Uses Service

i. Uses for population health monitoring?

ii. Uses for research?

b. Dataset Development Programme

c. Bases for minimum data sets, such as

i. Acute Myocardial Infarction Data Set

ii. Summary Core Data Set fore Diabetes

iii. National Cancer Data Set

iv. Central Returns, such as sexually transmitted diseases
Series 2, No. 143 [ Page 75

2. At most general level, what do you see as the potential of the national strategy for electronic health records and core

elements of national health information infrastructures to contribute, directly or indirectly, to population health monitoring

and research? In what timeframe?

a. Personal Demographics Service

b. Personal Spine Information Service

c. Secondary Uses Service

3. At more specific levels:

a. Especially potential for linkage of existing administrative (Hospital Episode Statistics), population-based survey (Health

Survey for England, National Survey of NHS Patients), and registry (cases of infectious diseases, births, deaths), data

with EHR data for population health monitoring and research purposes

i. Should note that U.S. models for population-based registers may be different than the NHS practice-based registers

for cancers, CHD, diabetes and stroke

b. Replacement of current population-based data collections by EHRs, such as

i. Disease and health event registers

ii. Surveys, including institution-based surveys, provider surveys, and population-based surveys

iii. Administrative health data

c. If not actual replacement of current population-based data collections, does the potential exist for supplementation of

current data collections by EHRs?

i. Collection of new data items that would be added to population-based data collections

ii. Entirely new data collections or new data collection streams?

d. What conditions would facilitate the development of such uses?

i. Linkages

ii. Replacements

iii. Supplementations?

e. What conditions would impede the development of such uses

i. Linkages

ii. Replacements

iii. Supplementations

4. Follow-up

a. Other issues to discuss

b. Other key informants who should be contacted
Page 76 [ Series 2, No. 143

Appendix 4. Key Informants

4-A. Key Informants Australia

Name Position

Helena Britt Director

Family Practice Medical Research Centre and

Director, General Practice Statistics and Classification Unit, AIHW

Tim Churches Manager

Population Health Information Branch

New South Wales Department of Health

Enrico Coiera Professor and Foundation Chair in Medical Informatics

Faculty of Medicine and Co-Director,

Centre for Medical Informatics

University of New South Wales

Amanda Cornwall Director

Environmental Policy

Department of Sustainability and Environment

Victoria

Margaret Fisher Director

Executive Unit,

AIHW

John Glover Director

Public Health Information Development Unit

University of Adelaide

Diana Hetzel Senior Researcher

Public Health Information Development Unit

University of Adelaide

Louisa Jorm Director

Centre for Epidemiology and Research

New South Wales Department of Health

Christopher Kelman Medical Director

Department of Health and Ageing

Richard Madden Director

AIHW

Ric Marshall Manager

Health Information and Performance Evaluation,

Metropolitan Health and Aged Care Division,

Department of Human Services,

Victoria

Graeme Miller Medical Director

General Practice Statistics and

Classification Unit, AIHW

David Muscatello Senior Epidemiologist and Manager

Emergency Department Surveillance

Centre for Epidemiology and Research

New South Wales Department of Health

Ian Reinecke Chief Executive

National E-Health Transition Authority

Merran Smith Director

Health Information,

Department of Health

Western Australia

Elizabeth Sullivan Director

National Perinatal Statistics Unit, AIHW

Kaely Woods Director

Evaluation, Integration, and International,

National eHealth Systems Branch

Department of Health and Ageing
Series 2, No. 143 [ Page 77

4-B. Key Informants Canada

Name Position

Charlyn Black Professor and Director

Centre for Health Services and Policy Research,

University of British Columbia

David Buckeridge McGill University

Gary Catlin Director

Health Statistics Division

Statistics Canada

Erica Di Ruggiero Associate Director

Institute for Population and Public Health

Canadian Institutes of Health Research

Dennis Giokas Chief Technology Officer

Canada Health Infoway

Elizabeth Gyorfi-Dyke Director

Canadian Population Health Initiative

CIHI

Trevor Hodge Vice President

Investment Strategy and Planning,

Canada Health Infoway

John Millar Executive Director

Population Health Surveillance and Disease Control Planning

Provincial Health Services Authority

British Columbia

Linda Miller Director

Information Management,

Alberta Health and Wellness

David Mowat Deputy Chief Public Health Officer

Public Health Practice and Regional Operations

Public Health Agency of Canada

Tom Noseworthy Director

Centre for Health and Policy Studies

Community Health Sciences

Faculty of Medicine

University of Calgary

Denis J. Protti Professor

School of Health Information Science

University of Victoria

Noralou Roos Director

Manitoba Centre for Health Policy

University of Manitoba

Donna Strating Chief Information Officer

Capital Health, Edmonton

Robyn Tamblyn Professor

Faculty of Medicine

McGill University

Pierre Tousignant Interdisciplinary Research Group on Health,

Faculty of Medicine, Public Health,

University of Montreal

Michael Wolfson Assistant Chief Statistician

Analysis and Development

Statistics Canada

Jennifer Zelmer Vice President for Research and Analysis,

CIHI
Page 78 [ Series 2, No. 143

4-C. Key Informants England

Name Position

Pejman Azarmina Public Health Information Analyst

Islington Primary Care Trust

Matthew G. Evans Mental Health Care of Older People

Camden and Islington Mental Health and Social Care Trust

John Fox Director of Statistics

Department of Health

Chris Ham Professor of Health Policy and Management

Health Services Management Centre

University of Birmingham

Nicholas Hicks Director of Public Health

Milton Keynes Primary Care Trust

Matthew Jones Judge Institute of Management

University of Cambridge

Dipak Kalra Senior Clinical Lecturer in Health Informatics

Royal Free and University College Medical School

University College London

Centre for Health Informatics and Multiprofessional Education

Richard Lilford Professor

Department of Public Health and Epidemiology

University of Birmingham

Azeem Majeed Professor and Head of Department of Primary Care and Social Medicine

Imperial College London

Catherine Mary Moore Nurse Informatician

Perot Systems

David Pencheon Director

Eastern Region Public Health Observatory

Denis J. Protti Professor

School of Health Information Science

University of Victoria

Canada

Jem Rashbass Non-executive Director

National Health Services Information Authority, and Director

Centre for Applied Research in Education Technologies

University of Cambridge

Hugh Sanderson Consultant in Public Health/Network Information Lead

Winchester and Eastleigh Healthcare Trust

Martin Severs Associate Dean

Portsmouth Institute of Medicine, Health and Social Care

Richard Thomson Professor of Epidemiology and Public Health

Faculty of Medical Sciences

University of Newcastle upon Tyne

Jeremy Thorp Director of Development

National Health Service Information Authority

Dean White Head of Service Design

Secondary Uses Service

The Health and Social Care Information Authority

John Wilkinson Chair

Association of Public Health Observatories

Director

North East Public Health Observatory

Nancy Wolstenholme Strategic Relationship Manager

Intelligent Information Management Programme

Healthcare Commission
Series 2, No. 143 [ Page 79

4-D. Key Informants New Zealand

Name Position

Peter Aagaard Acting Manager

Health Information Strategy & Policy

New Zealand Health Information Service

Corporate & Information Directorate

Ministry of Health

Barry Borman Manager

Public Health Intelligence.

Ministry of Health

Stephen Chu Associate Professor of Health Informatics

University of Auckland

Peter Davis Professor and Head of Department,

Department of Sociology

University of Auckland

Martin Entwistle Chief Executive Officer

Enigma Publishing Ltd.

Jon Foley Senior Analyst

Ministry of Health

Andrew Holmes Manager

Clinical Services Strategy

Clinical Services Directorate

Ministry of Health

Rod Jackson Professor of Epidemiology

Head of Epidemiology and Biostatistics

Director of EPIQ (Effective Practice, Informatics and Quality Improvement)

School of Population Health

Faculty of Medical and Health Sciences

University of Auckland

Lannes Johnson Medical Director

HealthWest Ltd.

Laurence Malcolm Professor Emeritus and Consultant

Aotearoa Health

David E. Monks Director of Information Technology

HealthWest Ltd.

Richard Shiffman Center for Medical Informatics

Yale University School of Medicine
Page 80 [ Series 2, No. 143

4-E. Key Informants United States

Name Position

Jeffrey S. Blair Vice President

Medical Records Institute

David J. Brailer National Coordinator for Health Information Technology

Department of Health and Human Services

Claire V. Broome Director

Integrated Health Information Systems

Centers for Disease Control and Prevention

Simon P. Cohn Associate Executive Director

The Permanente Foundation

Kaiser Permanente

Chair

National Committee on Vital and Health Statistics

Theresa Cullen Senior Medical Informatics Consultant

Office of Information Technology

Indian Health Service

Jac D. Davies Director

Program Development

Inland Northwest Health Services

Seth Foldy health.e.volution

Medical College of Wisconsin

Mark Frisse Professor of Biomedical Informatics

Vanderbilt Center for Better Health

Vanderbilt University

Roland Gamache Director

State Health Data Center

Indiana State Department of Health

Lawrence P. Hanrahan Chief Epidemiologist

Bureau of Health Information and Policy

Wisconsin Division of Public Health

Alan R. Hinman Senior Public Health Scientist

Task Force for Child Survival and Development

Public Health Informatics Institute

William J. Kassler Medical Director

New Hampshire Department of Health

Chair

Informatics Policy Committee

Association of State and Territorial Health Officials

David A. Kindig Wisconsin Public Health/Health Policy Institute

Robert M. Kolodner Acting Deputy Chief Information Officer for Health

Veterans Health Administration

Department of Veterans Affairs

Martin LaVenture Director

Public Health Informatics

Minnesota Department of Public Health

Nancy M. Lorenzi Professor of Biomedical Informatics

Assistant Vice Chancellor for Health Affairs

Vanderbilt University Medical Center

President

International Medical Informatics Association

Denise Love Executive Director

National Association of Health Data Organizations

Patrick O’Carroll Regional Health Administrator

Department of Health and Human Services,

Public Health Service Region X

John R. Lumpkin Senior Vice President and Director

Health Care Group

The Robert Wood Johnson Foundation
Series 2, No. 143 [ Page 81

4-E. Key Informants United States—Con.

Name Position

Marc Overhage Chief Executive Officer and President

Indiana Health Information Exchange

Associate Professor

Indiana University School of Medicine

Eric Pan Associate Fellowship Director and Senior Analyst

Center for Information Technology Leadership

Partners Healthcare System

Jan Root Assistant Executive Director

Utah Health Information Network

Charles Rothwell Director

Division of Vital Statistics

National Center for Health Statistics

Centers for Disease Control and Prevention

Barbara Rudolph Director

Leaps and Measures

The Leapfrog Group

Mary Shaffran Principal Director

Public Health Systems

Association of State and Territorial Health Officials

Dean F. Sittig Director

Applied Research in Medical Informatics

Northwest Permanente, PC

Micky Tripathi Chief Executive Officer

Massachusetts eHealth Collaborative

John White Health IT Portfolio Manager

Agency for Healthcare Research and Quality

Gregory A. Wilson Professor of Pediatrics

Department of Pediatrics

Indiana University School of Medicine

Scott Young Director

Health Information Technology

Agency for Healthcare Research and Quality

Amy Zimmerman-Levitan Chief

Office of Children’s Preventive Services

Rhode Island Department of Health
Page 82 [ Series 2, No. 143

4-F. Consultations

Name Position Type of consultation

Alan B. Cohen Professor and Executive Director

Health Policy Institute

Boston University

Meeting, e-mail,

telephone

Dale Bramley Manager,

Health Gain

Waitemata District Health Board

E-mail

Mary Jo Deering Director for Informatics Dissemination

Center for Bioinformatics

National Cancer Institute

Telephone

Don E. Detmer Professor Emeritus and Professor of Medical Education

Director of Clinical Informatics

University of Virginia Medical System

President and Chief Executive Officer

American Medical Informatics Association

E-mail

Peter Drury Peter Drury Consulting Ltd. E-mail

Marjorie S. Greenberg Chief

Classifications and Public Health Data Standards

National Center for Health Statistics

Centers for Disease Control and Prevention

Telephone

David A. Ross Director

Public Health Informatics Institute

Telephone

Richard N. Shiffman Associate Professor

Department of Pediatrics

Associate Director

Yale Center for Bioinformatics

Yale School of Medicine

Telephone

Barbara Starfield University Distinguished Professor

Johns Hopkins Medical Institutions

The Johns Hopkins University

Telephone

Steven J. Steindel Senior Advisor, Informatics Resource Management Telephone

Centers for Disease Control and Prevention

Elliot Stone

Diane Watson Assistant Director E-mail

Institute of Health Services and Policy Research

Canadian Institutes for Health Research

Faculty

Centre for Health Services and Policy Research

University of British Columbia
Series 2, No. 143 [ Page 83

4-G. Reviewers

Name Position

Linda T. Bilheimer Associate Director

National Center for Health Statistics

Centers for Disease Control and Prevention (U.S.)

Alan B Cohen* Professor and Executive Director

Health Policy Institute

Boston University (U.S.)

Theresa Cullen* Senior Medical Informatics Consultant

Office of Information Technology

Indian Health Service (U.S.)

Linda Fischetti Health Informatics Architect

Future Health Systems Design and Usability

Veterans Health Administration (U.S.)

John Glover Director,

Public Health Information Development Unit

University of Adelaide (AU)

Diana Hetzel Senior Researcher,

Public Health Information Development Unit

University of Adelaide (AU)

Edward L. Hunter Associate Director

National Center for Health Statistics

Centers for Disease Control and Prevention

and

Acting Deputy Director

Centers for Disease Control and Prevention, Washington Office (U.S.)

Robert M. Kolodner Acting Deputy Chief Information Officer for Health

Veterans Health Administration

Department of Veterans Affairs (U.S.)

R. Gibson Parrish Adjunct Associate Professor

Dartmouth Medical School (U.S.)

David Pencheon Eastern Region Public Health Observatory (UK)

Michael Shwartz Professor, Operations and Technology

Boston University School of Management (U.S.)

Barbara Starfield University Distinguished Professor

Johns Hopkins Medical Institutions

The Johns Hopkins University (U.S.)

Steven J. Steindel Senior Advisor, Informatics Resource Management

Centers for Disease Control and Prevention (U.S.)

Dean White* Head of Service Design

Secondary Uses Service

The Health and Social Care Information Authority (UK)

* Review of selected sections.
Vital and Health Statistics

series descriptions

SERIES 1. Programs and Collection Procedures—These reports

describe the data collection programs of the National Center

for Health Statistics. They include descriptions of the methods

used to collect and process the data, definitions, and other

material necessary for understanding the data.

SERIES 2. Data Evaluation and Methods Research—These reports

are studies of new statistical methods and include analytical

techniques, objective evaluations of reliability of collected

data, and contributions to statistical theory. These studies

also include experimental tests of new survey methods and

comparisons of U.S. methodology with those of other

countries.

SERIES 3. Analytical and Epidemiological Studies—These reports

present analytical or interpretive studies based on vital and

health statistics. These reports carry the analyses further than

the expository types of reports in the other series.

SERIES 4. Documents and Committee Reports—These are final

reports of major committees concerned with vital and health

statistics and documents such as recommended model vital

registration laws and revised birth and death certificates.

SERIES 5. International Vital and Health Statistics Reports—These

reports are analytical or descriptive reports that compare U.S.

vital and health statistics with those of other countries or

present other international data of relevance to the health

statistics system of the United States.

SERIES 6. Cognition and Survey Measurement—These reports are

from the National Laboratory for Collaborative Research in

Cognition and Survey Measurement. They use methods of

cognitive science to design, evaluate, and test survey

instruments.

SERIES 10. Data From the National Health Interview Survey—These

reports contain statistics on illness; unintentional injuries;

disability; use of hospital, medical, and other health services;

and a wide range of special current health topics covering

many aspects of health behaviors, health status, and health

care utilization. They are based on data collected in a

continuing national household interview survey.

SERIES 11. Data From the National Health Examination Survey, the

National Health and Nutrition Examination Surveys, and

the Hispanic Health and Nutrition Examination Survey—

Data from direct examination, testing, and measurement on

representative samples of the civilian noninstitutionalized

population provide the basis for (1) medically defined total

prevalence of specific diseases or conditions in the United

States and the distributions of the population with respect to

physical, physiological, and psychological characteristics, and

(2) analyses of trends and relationships among various

measurements and between survey periods.

SERIES 12. Data From the Institutionalized Population Surveys—

Discontinued in 1975. Reports from these surveys are

included in Series 13.

SERIES 13. Data From the National Health Care Survey—These

reports contain statistics on health resources and the public’s

use of health care resources including ambulatory, hospital,

and long-term care services based on data collected directly

from health care providers and provider records.

SERIES 14. Data on Health Resources: Manpower and Facilities—

Discontinued in 1990. Reports on the numbers, geographic

distribution, and characteristics of health resources are now

included in Series 13.

SERIES 15. Data From Special Surveys—These reports contain

statistics on health and health-related topics collected in

special surveys that are not part of the continuing data

systems of the National Center for Health Statistics.

SERIES 16. Compilations of Advance Data From Vital and Health

Statistics—Advance Data Reports provide early release of

information from the National Center for Health Statistics’

health and demographic surveys. They are compiled in the

order in which they are published. Some of these releases

may be followed by detailed reports in Series 10–13.

SERIES 20. Data on Mortality—These reports contain statistics on

mortality that are not included in regular, annual, or monthly

reports. Special analyses by cause of death, age, other

demographic variables, and geographic and trend analyses

are included.

SERIES 21. Data on Natality, Marriage, and Divorce—These reports

contain statistics on natality, marriage, and divorce that are

not included in regular, annual, or monthly reports. Special

analyses by health and demographic variables and

geographic and trend analyses are included.

SERIES 22. Data From the National Mortality and Natality Surveys—

Discontinued in 1975. Reports from these sample surveys,

based on vital records, are now published in Series 20 or 21.

SERIES 23. Data From the National Survey of Family Growth—These

reports contain statistics on factors that affect birth rates,

including contraception, infertility, cohabitation, marriage,

divorce, and remarriage; adoption; use of medical care for

family planning and infertility; and related maternal and infant

health topics. These statistics are based on national surveys

of women of childbearing age.

SERIES 24. Compilations of Data on Natality, Mortality, Marriage, and

Divorce—These include advance reports of births, deaths,

marriages, and divorces based on final data from the National

Vital Statistics System that were published as National Vital

Statistics Reports (NVSR), formerly Monthly Vital Statistics

Report. These reports provide highlights and summaries of

detailed data subsequently published in Vital Statistics of the

United States. Other special reports published here provide

selected findings based on final data from the National Vital

Statistics System and may be followed by detailed reports in

Series 20 or 21.

For answers to questions about this report or for a list of reports published

in these series, contact:

Information Dissemination Staff

National Center for Health Statistics

Centers for Disease Control and Prevention

3311 Toledo Road, Room 5412

Hyattsville, MD 20782

1-866-441-NCHS (6247)

E-mail: nchsquery@cdc.gov

Internet: www.cdc.gov/nchs
MEDIA MAIL

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CDC/NCHS

PERMIT NO. G-284

U.S. DEPARTMENT OF

HEALTH & HUMAN SERVICES

Centers for Disease Control and Prevention

National Center for Health Statistics

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Hyattsville, MD 20782

OFFICIAL BUSINESS

PENALTY FOR PRIVATE USE, $300

06-0129 (01/2006)

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