Policy Makers Summary

November 2002

Department of Health and Human Services Data Council

Centers for Disease Control and Prevention

National Center for Health Statistics

National Committee on Vital and Health Statistics

Shaping a

for the

Century

Health Statistics

Vision

21st

1 Shaping a Health Statistics Vision for the 21st Century

very day, countless decisions are made concerning public and 

private health. Local, state, and federal budgets are drawn up 

annually that commit taxpayers’ dollars to, or withdraw them from, 

health programs. Legislatures routinely consider health-related laws 

with immense human, bureaucratic, and fi nancial consequences. Yet often, 

decision-makers have access to only part of the information they need to 

make the best decisions. 

Guiding the assessment, development, and evaluation of health policy 

is a major use of health statistics, the numerical data that characterize the 

health of a population and the factors infl uencing it. Health statistics are 

used, as well, to create fundamental knowledge and to guide population 

health programs and personal health decisions. But their potential for 

informing decision-making will be realized only when the health statistics 

enterprise has adequate coordination and resources and is guided by a broad 

view of population health.

It is not diffi cult to imagine ways in which better information could 

lead to better decisions:

• Coordinated data collection and analysis would result in

more reliable statistics and make it possible to draw

conclusions from estimates to guide decision-making. For

example, national and state surveys currently produce varying

estimates of the number of people without health insurance,

adding confusion to the efforts of policy-makers to address this 

issue. 

• Information on all the factors that infl uence population health

would make it possible to judge which factors are most

signifi cant for particular population health issues and to target

appropriate interventions. For example, better information on 

physician supply could enable policy-makers to understand

whether and how an increase in the number of specialists

in medium and smaller cities impacts upon the functional status 

of persons with chronic disabilities. 

• Knowing the relative contributions to population health of 

different investments would make it possible to set evidencebased priorities for future investments. For example, better 

information could enable policy-makers to determine the 

relative return on investment from increased funding of skin 

cancer prevention programs compared to increased funding of 

skin cancer screening clinics. 

E
2 Shaping a Health Statistics Vision for the 21st Century 

• Having access to timely data would allow decisions to be 

made on the latest evidence. For example, more timely data would 

enable policymakers to consider the impact of programs before they 

are reauthorized, or provide early warning signals of new health 

trends. 

• Comparable statistics across geographic levels would provide

state and local executives and legislators the tools to target

problems of particular significance in their areas, as well as to 

evaluate success in their program interventions. For example, better 

information could increase the capacity of the public health and 

health care systems to identify low rates of immunization in infants 

and children in specific neighborhoods, enabling more effective, 

efficient, and timely targeting of immunization programs.

A Vision for Realizing the Potential of 

Health Statistics

Building a health statistics enterprise that can fully support informed 

decision-making requires a number of interconnected conceptual, structural, 

and functional changes in our current system. They are described briefly 

below and discussed more fully in Shaping a Health Statistics Vision for 

the 21st Century, a new report developed through a two-year, national 

consultative process. The process involved more than 200 policy makers, 

public health and health care professionals, health statistics practitioners, 

researchers, and others in a wide range of locations in the United States. 

The National Committee on Vital and Health Statistics (NCVHS)∗, the 

National Center for Health Statistics (CDC/NCHS), and the Data Council 

of the U.S. Department of Health and Human Services (DHHS) coordinated 

the process and produced the report. NCVHS recommendations for 

translating the vision into practice are attached to the report. 

A view of population health and its determinants

The report begins by defining health statistics and describing the 

health statistics enterprise. It stresses that to be useful to health and health 

policy decision-makers, health statistics must represent all the factors 

influencing population health. That is, in addition to representing all 

dimensions of health outcomesincluding measures of functional status 

and wellbeing as well as disease in the populationhealth statistics must 

∗

NCVHS is the statutorily mandated public advisory body on health information policy to the 

Secretary of the U.S. Department of Health and Human Services. The NCVHS Workgroup on 

the 21st Century Vision for Health Statistics conducted this project for the Committee. 
3 Shaping a Health Statistics Vision for the 21st Century

represent community characteristics, the natural environment, and cultural 

and political contexts. 

This view of population health and its determinants, shown in the 

model in Figure 1 below, defines the scope of information the health 

statistics enterprise should obtain and make available. The model can be 

used to identify gaps in current data and in the enterprise’s capacity to 

provide the data. 

Figure 1. Influences on the Population’s Health
4 Shaping a Health Statistics Vision for the 21st Century 

A strengthened hub for the health statistics enterprise

Another model developed for the report (Figure 2) shows the stages and 

components of an ideal health statistics cycle and specifies the activities of 

the health statistics enterprise and their interactions.

Figure 2. Health statistcs cycle
5 Shaping a Health Statistics Vision for the 21st Century

A major difference between this idealized view and current conditions 

is that the components of this health statistics cycle are tied together by an 

integrating “hub.” As envisioned, the hub coordinates the activities of the 

health statistics enterprise, stimulates collaborative efforts, sets standards, 

reviews and revises the vision, generates new methods and approaches, and 

protects privacy, confidentiality and security. 

The need to strengthen the hub to carry out these functions was 

a major emphasis of the visioning process. Participants conveyed a 

strong message that new approaches to enterprise-wide coordination and 

integration are needed because existing ones are largely ineffective, causing 

fragmentation and inefficiency. 

Conceptual framework, core values, and guiding 

principles

The report proposes that the mission of the health statistics enterprise 

is to efficiently provide timely, accurate, and relevant information that can 

be used to improve the population’s health. It outlines the attributes of the 

needed conceptual framework, and specifies core values and principles to 

guide the enterprise in realizing the vision for health statistics. 

The overarching conceptual framework envisioned for the health 

statistics enterprise has these characteristics: it focuses on health, the 

population, and the community; it emphasizes distribution and level of 

health; it delineates major influences on health; and it guides a research 

agenda for improving the health of the population. The use of an 

overarching conceptual framework will remind policy-makers and public 

health practitioners of the myriad of factors that must be considered and 

addressed in designing and implementing programs to improve population 

health, and help to reduce narrow, disease-specific, and categoricallyfocused programs. 

Four core values are envisioned for the health statistics enterprise: 

• Maintaining the confidentiality and security of individually 

identifiable health information

• Maximizing the scientific integrity of all aspects of health statistics 

while acknowledging the specific ways in which the political, 

cultural, and business contexts may affect data collection, analysis, 

and interpretation

• Optimizing the enterprise’s accountability to its users to ensure 

the availability of the information that is needed for improving the 

nation’s health
6 Shaping a Health Statistics Vision for the 21st Century 

• Ensuring the enterprise’s accountability to its data suppliers to 

minimize their burden and to provide them with timely feedback

The report concludes by identifying ten guiding principles for 

actualizing the core values: 

1. Enterprise-wide planning and coordination to ensure relevance 

 to local, state, and national policy and program decision-making 

 and to an overall conceptual framework of the influences on the 

 health of populations

2. Broad collaboration among data users, producers, and suppliers at 

 local, state, and national levels to ensure efficiency of the health 

 statistics enterprise and usefulness of the data that it produces

3. Rigorous policies and procedures for protecting the privacy of 

 individuals and the confidentiality and security of data

4. Flexibility to identify and address emergent health issues and needs

5. Use of data standards to facilitate sharing and comparability of 

 data

6. Sufficient detail at different levels of aggregation to support local, 

 state, and national policy and programmatic decision-making

7. Integrated, streamlined data collection for multiple purposes

8. Timely production of valid and reliable health statistics

9. Appropriate access to and ease of use of health statistics 

10. Continuous evaluation of the completeness, accuracy, and

 timeliness of health statistics and of the ability of the health 

 statistics enterprise to support their production

The NCVHS Recommendations

After working closely with its partners to create a vision for health 

statistics reflecting the views and concerns of consultation participants, 

the National Committee on Vital and Health Statistics developed 36 

recommendations for realizing the vision. Thirty relate to and flesh out the 

guiding principles, and six move toward the adoption of an overarching 

conceptual framework. The recommendations are summarized in the 

Appendix. 

NCVHS believes that the top priority for realizing the vision is to 

build the integrating and coordinating hub for the health statistics enterprise. 

This priority is expressed in guiding principle 1, regarding enterprise-wide 

planning and coordination. Four NCVHS recommendations relate to this 

priority: 
7 Shaping a Health Statistics Vision for the 21st Century

• Assign responsibility and authority for health statistics leadership 

within DHHS to a reconstituted National Center for Health 

Statistics, supported by a strong Board of Scientific Counselors, 

• Establish a national Health Statistics Planning Board with overall 

responsibility for planning and agenda setting for health statistics 

in the United States. 

• Designate overall responsibility for health statistics planning and 

coordination activities within each state’s government to a single 

state agency, supported by autonomous state Health Statistics 

Planning Boards. 

• Develop appropriate graduate and in-service training and 

continuous education addressing all elements of the health statistics 

cycle. 

Carrying out these four recommendations would facilitate the 

achievement of the Committee’s recommendations for the other nine 

guiding principles. Those recommendations address research agendas, data 

set development, health statistics reports, dissemination of best practices, 

training, and other key topics. 

Finally, the 21st century health statistics enterprise in the U.S. 

must be viewed within the context of the National Health Information 

Infrastructure (NHII), which has the potential to connect all health decisionmakers to sound information and to each other. NCVHS recommended a 

strategy for building the NHII in a November 2001 report.* The vision for 

health statistics contributes to the development of the Population Health 

Dimension of the NHII. Participants in the health statistics enterprise must 

become actively and enthusiastically engaged in this wider effort.

Implications for Policy-Makers

Shaping a Health Statistics Vision for the 21st Century and the 

NCVHS recommendations are a call to action to colleagues in the fields 

of health policy, public health, health statistics, and health care to see their 

activities in the context of this broad vision and to work in their domains to 

help realize it. 

The most important benefits from the proposed changeswhich will 

take many years to accomplishwill accrue to everyone in the American 

population in the form of improved personal and community health, more 

*

NCVHS, Information for Health: A Strategy for Building the National Health Information 

Infrastructure, 15 November 2001.
8 Shaping a Health Statistics Vision for the 21st Century 

efficient use of public and private dollars, and better support for personal 

decision-making. In addition, those working on health policy, public health, 

health statistics, and health care will benefit by being able to do their jobs 

with greater efficiency and effectiveness. 
9 Shaping a Health Statistics Vision for the 21st Century

Appendix: Summary of NCVHS recommendations

Recommendations on data access 

• Use the World Wide Web to Improve access to national, state, 

and local data on the population’s health and influences on the 

population’s health. [GP 9.1]

• Disseminate throughout the health statistics enterprise the best 

methods for maximizing appropriate access to and ease of use of 

health statistics. [GP 9.3]

• Enhance regularly released health statistics reports to reflect an

overarching conceptual framework of influences on the 

population’s health. [CF 4]

Recommendations on data set development

• Develop systems to actively monitor the population’s health and 

potential influences on the population’s health in order to identify 

emerging problems. [GP 4.1]

• Develop mechanisms to rapidly modify the samples, data collection 

strategies, and data collection instruments of ongoing data 

collection systems in response to emerging issues. [GP 4.2]

• Geocode all ongoing data sets that feed the health statistics 

enterprise to the census block group level. [GP 6.2]

• Develop and validate topic-specific question modules for 

population-based surveys to support state and local agencies’ 

development of small-area health statistics. [GP 6.3]

• Identify duplicative data collection efforts and eliminate 

redundancy. [GP 7.1]

• Support and fund efforts within individual states to integrate or 

better coordinate, as appropriate, discrete data systems. [GP 7.2]

• Support and fund ongoing multi-purpose data collection systems 

and data integration efforts. [GP 7.3]

• Develop and adopt benchmarks for timeliness of release of data and 

reports derived from those data. [GP 8.1]

• Assure that appropriate measures of functional status and wellbeing are included in ongoing systems that are a part of the health 

statistics enterprise. [CF 1]

• Prepare and provide to staff of state and Federal agencies with

health statistics responsibilities a manual and a “tool kit” of data 

sets for use in community-level analyses. [CF 2]

• Develop person-based, longitudinal data sets and surveys in order

to develop portraits of influences on the population’s health 

throughout the life cycle. [CF 3]
10 Shaping a Health Statistics Vision for the 21st Century 

Recommendations on data standards 

• Harmonize the CDC public health conceptual data model with 

the overarching conceptual framework for the health statistics 

enterprise in order to facilitate the development of standards. [GP

5.1]

• Adopt or, if necessary, develop standards for data elements 

commonly used in all methods of data collection, for electronically 

transmitting data, for presenting and disseminating data, and for 

providing electronic access to data. [GP 5.2]

• Provide guidance for implementing and auditing the use of 

standards by the health statistics enterprise. [GP 5.3]

• Contribute to the national standards setting process. [GP 5.4]

Recommendations on enterprise structure 

• Assign overall responsibility for health statistics leadership within 

DHHS to a reconstituted National Center for Health Statistics, 

supported by a strong Board of Scientific Counselors. [GP 1.1]

• Establish a national Health Statistics Planning Board with overall 

responsibility for planning and agenda setting for health statistics in 

the United States. [GP 1.2]

• Assign overall responsibility for health statistics planning and 

coordination activities within each state’s government to a single 

state agency. Establish a Health Statistics Planning Board in each 

state with overall responsibility for planning and agenda setting for 

health statistics within the state. [GP 1.3]

Recommendations on evaluation 

• Compile feedback on the practical applications of health statistics 

to policy, research, and public health practice and disseminate these 

findings to providers of data, policymakers, and the public. [GP 

10.1]

• Conduct periodic evaluations of NCHS’ adherence to the National 

Academy of Sciences’ attributes of a Federal statistical agency. [GP 

10.2]

Recommendations on policy 

• Develop a code of fair information practices for the health statistics 

enterprise. [GP 3.1]

• Develop guidance on the application of the HIPAA Standards for 

Privacy of Individually Identifiable Health Information to health 

statistics. [GP 3.2]
11 Shaping a Health Statistics Vision for the 21st Century

• Develop model state and Federal privacy, confidentiality, and

security statutes for government-sponsored health statistics. [GP

3.3]

• Develop a toolbox of privacy, confidentiality, and security best 

practices for use throughout the health statistics enterprise. [GP 3.4]

Recommendations on a research agenda 

• Develop and fund a research agenda for the study of methods and 

technologies to enhance the privacy, confidentiality, and security of 

health statistics. [GP 3.6]

• Develop and fund a research agenda to explore new data 

collection strategies that can rapidly and flexibly provide data

on emerging influences on the population’s health; assess the

validity and reliability of items used in key ongoing data collection 

systems; and estimate any loss in accuracy from early publication 

of provisional, incomplete data from ongoing data collection 

systems. [GP 4.3]

• Develop methods to validly and reliably estimate important 

indicators of the health, and of the influences on the health, of state 

and local populations. [GP 6.1]

• Develop and implement methods and technologies that will 

maximize the timeliness of release from ongoing data collection 

systems of regularly scheduled reports. [GP 8.2]

• Provide controlled access to potentially identifiable individual-level 

data on the population’s health and influences on the population’s 

health. Such access would be provided, at designated sites, to 

researchers pursuing approved projects. [GP 9.2]

• Support research into how health statistics can be used more 

effectively to understand the causal relationships between specific 

influences on health and functionality and well-being in general and 

specific high priority diseases. [CF 6]

Recommendations on training 

• Expanded graduate, in-service, and continuous training

opportunities should be developed and offered in focusing on all 

elements of the health statistics enterprise. [GP 1.4]

• Develop a model training agenda and training materials for use

throughout the health statistics enterprise focusing on fair

information practices, privacy, confidentiality, and security. [GP 

3.5]
12 Shaping a Health Statistics Vision for the 21st Century

• Provide training about concepts related to the population’s health 

and influences on the population’s health at professional meetings 

attended by staff of state and Federal agencies with health statistics 

responsibilities. [CF 5]