IMMUNIZATION INFORMATION SYSTEMS

NVAC PROGRESS REPORT

FEBRUARY 2007

[Background 2](#background)

[Ensure appropriate protections of privacy and confidentiality for
individuals and security for information included in the registry.
3](#ensure-appropriate-protections-of-privacy-and-confidentiality-for-individuals-and-security-for-information-included-in-the-registry.)

[Ensure participation of all immunization providers and recipients.
4](#ensure-participation-of-all-immunization-providers-and-recipients.)

[Ensure appropriate functioning of registries.
6](#iis-are-a-critical-tool-that-can-increase-and-sustain-increased-vaccination-coverage-by-consolidating-vaccination-records-of-children-from-multiple-providers-generating-reminder-and-recall-vaccination-notices-for-each-child-and-providing-official-vaccination-forms-and-vaccination-coverage-assessments.-a-fully-operational-iis-also-can-prevent-duplicate-vaccinations-limit-missed-appointments-reduce-vaccine-waste-and-reduce-staff-time-required-to-produce-or-locate-vaccination-records-or-certificates.)

[Ensure sustainable funding for registries.
9](#ensure-sustainable-funding-for-registries.)

[Newer uses of IIS 11](#newer-uses-of-iis)

[*IIS and adolescent/adult immunization*
11](#iis-and-adolescentadult-immunization)

[*IIS and Preparedness* 11](#iis-and-preparedness)

[*IIS and vaccine shortages* 12](#iis-and-vaccine-shortages)

[*IIS and interoperability with other health information systems/health
information exchanges (HIE)*
12](#iis-and-interoperability-with-other-health-information-systemshealth-information-exchanges-hie)

[Conclusions and recommendations 13](#conclusions-and-recommendations)

[*Recommendations*](#__RefHeading___Toc146008932) 13

[Glossary of acronyms 18](#__RefHeading___Toc146008933)

[Table 1 Recommendations from December 2000 Report
19](#table-1-recommendations-from-december-2000-report)

[Table 2 Summary of Best Practices and Successful Strategies by Barrier
20](#table-2-summary-of-best-practices-and-successful-strategies-by-barrier)

[Table 3 Minimum functional standards for IIS
22](#table-3-minimum-functional-standards-for-iis)

Table 4 Support for Immunization Information
Systems..................................23

[Appendix 1 Immunization Registry Strategic Plan 2002-2007
24](#appendix-1-immunization-registry-strategic-plan-2002-2007)

[Appendix 2 IIS Publications 2001-2006
26](#appendix-2-iis-publications-2001-2007)

[Figure 1 Percentage of children \<6 participating in IIS December 31,
2005
32](#figure-1-percentage-of-children-6-participating-in-iis-december-31-2005)

[Figure 2 Percentage of private provider sites participating in IIS
December 31, 2005
33](#figure-2-percentage-of-private-provider-sites-participating-in-iis-december-31-2005)

[Figure 3 CDC funding for IIS, 1995-2005
34](#figure-3-cdc-funding-for-iis-1995-2005)

[References 35](#references)

#### 

**Immunization Information Systems**

**NVAC Progress Report**

**February 2007**

# Background

In 1997, NVAC undertook an Initiative on Immunization Registries by
forming a workgroup made up of NVAC members and others. The workgroup
was charged with identifying barriers to developing and implementing
immunization registries, and defining milestones for the development and
implementation of a comprehensive plan for the implementation of
universal state-based and community-based immunization registries. The
workgroup held four public meetings attended by more than 400 persons
and received testimony from 104 persons. At the request of the
workgroup, the National Immunization Program (NIP)[^1] of the Centers
for Disease Control and Prevention (CDC) conducted a series of 20 focus
groups around the country to obtain views of parents. The result of this
activity was the report "Development of Community- and State-Based
Immunization Registries" approved by NVAC January 12, 1999.[^2]

The report defined immunization registries as "confidential,
computerized information systems that contain information about
immunizations and children." A Healthy People 2010 goal has been
established to increase to 95% the proportion of children \<6 years of
age who participate in fully operational population-based immunization
registries.[^3] Many immunization registries have expanded and contain
information about persons of all ages. Registries have become known as
"Immunization Information Systems" (IIS) and will be so called during
the remainder of this report.

The NVAC report identified the vision guiding its recommendations as "a
nation with all children appropriately protected against
vaccine-preventable diseases" and enunciated the goal of a "nationwide
network of community/state population-based registries that are capable
of sharing information while maintaining privacy and confidentiality."
Four primary objectives were identified and recommendations and action
steps were developed for each:

-   Ensure appropriate protections of privacy and confidentiality for
    individuals and security for information included in the registry.

-   Ensure participation of all immunization providers and recipients.

-   Ensure appropriate functioning of registries.

-   Ensure sustainable funding for registries.

CDC/NIP published a response to this report in 2001.[^4] In January,
2001, NVAC approved a report on the substantial progress that had been
made in the nearly-two year period since issuance of the original
report.[^5] It made a series of recommendations relating to each of the
four objectives (Table 1). The remainder of this report will describe
progress since 2000 in each of the four areas.

# Ensure appropriate protections of privacy and confidentiality for individuals and security for information included in the registry.

A great deal of attention has been paid to issues of privacy,
confidentiality, and security - to the extent that these have not been
major barriers to implementation of IIS. CDC led a team including
representatives from the National Vaccine Program Office, state health
departments, and the All Kids Count program that developed minimum
specifications for protecting the privacy of registry participants and
the confidentiality of registry data. After review by privacy
consultants and other stakeholders, the report was approved by NVAC in
February 2000.[^6] Technical assistance has been provided to states to
facilitate compliance with minimum specifications and to ensure that IIS
that are regulated by HIPAA comply with requirements. CDC has issued
guidance on HIPAA and public health[^7] and the American Immunization
Registry Association (AIRA) has issued a resource document to help IIS
be in compliance with HIPAA security standards.[^8] Every Child By Two
(ECBT), in collaboration with George Washington University, developed a
model immunization information sharing statute.[^9]

CDC provides support for immunization activities (including IIS) to 64
grantees (all 50 states, DC, Chicago, Houston, New York City,
Philadelphia, San Antonio, Puerto Rico, Virgin Islands, and six Pacific
island countries or territories) through Section 317 of the Public
Health Service Act. According to the 2005 Immunization Registry Annual
Report (IRAR), as of December 31, 2005, 50 state or city grantees have
written confidentiality policies (47 have been reviewed and found to be
in compliance with federal, state, and local legislation) and 52 state
or city grantees have written security policies (47 reviewed and in
compliance)(Gary Urquhart, CDC, unpublished data, August 23, 2006).
Privacy developments at the national level and their implications for
IIS are being monitored by CDC.

One area in which there have been difficulties has been in the exchange
of information with schools. The Family Educational Rights and Privacy
Act (FERPA) provides that "Generally, schools must have written
permission from the parent or eligible student in order to release any
information from a student's education record. However, FERPA allows
schools to disclose those records, without consent, to the following
parties or under the following conditions....appropriate officials in
cases of health and safety emergencies."[^10] Interpretation of FERPA
varies among the states but, in general, interpretations have meant that
the exchange of health-related information has been one way, with
schools receiving health information about students from the public
health and health care systems but not providing health information to
those systems without prior parental consent.

It is unclear whether records of school clinics maintained separately
from the school system and not funded by the Department of Education
would be considered part of the "educational record" and therefore
subject to the provisions of FERPA.[^11]

# 

# Ensure participation of all immunization providers and recipients.

Progress in state or city grantee participation is shown below:

**[2000]{.underline} [Dec 31, 2005]{.underline}**

Children \<6 participating 21% 56%

Public provider sites participating 38% 75%

Private provider sites participating 19% 44%

As of December 31, 2005, only one state (NH) reported having no efforts
to develop and implement an IIS. Nine states, Philadelphia, and New York
City reported \>95% of children \<6 participating in IIS (Figure 1); 23
states and New York City reported \>95% of public immunization provider
sites participating; and five states and the District of Columbia
reported \>95% of private immunization provider sites participating in
IIS (Figure 2).[^12]

In 2005, America's Health Insurance Plans (AHIP) surveyed members about
a variety of immunization related activities, including participation in
IIS. Of 140 plans surveyed, 61 (44%) responded. 85% of HMOs and PPOs
reported that they were currently sharing information with an existing
immunization registry in their service area/state.[^13] Collaboration
among AIRA, ECBT, and CDC promoting data exchange between IIS and health
plans resulted in an increase in the number of IIS who exchange data
with health plans from 15 in 2002 to 35 in 2004. In addition, 40 IIS
provide data to health plans for HEDIS reporting. AIRA and ECBT have
developed a practical guide to partnering with health plans.[^14]

In 2004, Glazner *et al* conducted a survey of two rural family
practices, two rural community health centers, three urban pediatric
practices and two rural public health departments to measure labor costs
and time for immunization-related activities during both pre- and
post-IIS implementation periods.[^15] They found that, for private
practices and community health centers, total time spent by nurses in
all immunization activities (including time spent on IIS activities)
decreased from pre-IIS implementation to post-IIS implementation.  These
findings suggest that participation in an IIS can provide a net benefit
by improving the efficiency of the immunization delivery process.

A 2001 national survey of pediatricians and public health clinics found
that, although 38% of pediatricians were conducting regular assessments
of immunization coverage in their practices, only 16% were currently
using routine reminder or recall messages.[^16] Among public health
clinics, 85% were conducting regular assessment and 51% were using
reminder or recall notices. IIS can readily generate reminder/recall
messages although this functionality is not yet being used by many
providers at the local level.

In 2002, Clark *et al* conducted a survey of 264 private practices
identified as registry non-participants and 971 practices identified as
registry participants in 15 states with population-based statewide
IIS.[^17] Overall response rate was 62%. Participants primarily used the
registry to input data on vaccines administered, to review immunizations
records of individual patients, and to print immunization records for
patients. Few reported using the registry to assess immunization
coverage for the practice or generate reminder/recall notices. Few
reported any significant problems in using the registry. Nearly half
(48%) interacted with the registry via internet, 36% submitted hard-copy
data by mail or fax; 19% used modem connections; 10% reported more than
one mode of interaction.

Among non-participants in the Clark survey, the most frequently cited
reasons for non-participation were: too much cost/staff time to
participate (38%), practice has its own system for recording and
monitoring immunizations (37%), practice has not yet been recruited for
or told about the registry (22%), and registry not compatible with
practice's computer system (21%). Factors most frequently cited by
non-participants as being essential to participation included
compatibility of registry technology and office computers (48%),
automated data entry (46%), and on-site technical assistance from
registry staff (33%).

In 2004-2005, AIRA surveyed IIS around the country to identify barriers
to provider participation in IIS and strategies that had been successful
in overcoming the barriers. The results were published in "Turning
Barriers into Opportunities: Survey and Best Practice Report."[^18] Of a
list of 32 previously identified challenges to provider participation,
more than 50% of the 55 respondents listed nine barriers as either
highly or somewhat significant. These challenges were consolidated into
a roster of six for purposes of displaying best strategies to overcome
them (Table 2).

The American Academy of Pediatrics has recently issued a new policy
statement on IIS that, in summary, states:

> "The American Academy of Pediatrics continues to support the
> development and implementation of immunization information
> systems....Pediatricians and others must be aware of the value that
> immunization information systems have for society, the potential
> fiscal influences on their practice, the costs and benefits, and areas
> for future improvement."[^19]

In its new "General Recommendations on Immunization," the Advisory
Committee on Immunization Practices (ACIP) states, in part:

# "IIS are a critical tool that can increase and sustain increased vaccination coverage by consolidating vaccination records of children from multiple providers, generating reminder and recall vaccination notices for each child, and providing official vaccination forms and vaccination coverage assessments. A fully operational IIS also can prevent duplicate vaccinations, limit missed appointments, reduce vaccine waste, and reduce staff time required to produce or locate vaccination records or certificates."[^20]

# 

# 

# Ensure appropriate functioning of registries.

Minimum functional standards for immunization registries were developed
by a Technical Working Group in 1997 and adopted, in slightly amended
form, by NIP in 2001 (Table 3).[^21] These standards have been used as
the basis for further development and implementation of IIS. As IIS have
matured and evolved to meet new public health needs, functionality has
been increased and the tracking of immunizations for older age groups
has been included. To address these new uses of IIS, it may be necessary
to expand the core data set endorsed by NVAC in 1995.[^22] Modifying
elements in the core data set will empower IIS to capture information
more uniformly and exchange it consistently with clinical systems and
other IIS. Modifications to the IIS core data set could ensure better
support for coverage assessment studies (such as the National
Immunization Survey), measure disparities for key demographic groups,
and increase tracking effectiveness in IIS operations such as
reminder/recall, outbreak control, and vaccine inventory control.

In late 2001-early 2002, the NIP Immunization Registry Support Branch
went through an extensive strategic planning effort involving
approximately 50 stakeholders. The effort resulted in enunciation of ten
focus areas, 13 goals, and 22 objectives (Appendix 1) to be achieved by
2007. The plan is currently guiding ISRB activities.

To stimulate improved performance and functionality of IIS, CDC/NIP
required a detailed business plan in 2006 applications for IIS funding
through Section 317. The plans summarized operational and financial
objectives and indicated how the objectives were to be achieved. The
plans will also assist CDC in monitoring IIS project activities and
providing additional technical assistance to those requiring it, with
priority placed on those with very low IIS child participation
rates.[^23]

In response to earlier NVAC recommendations, NIP established a Technical
Work Group to develop approaches to objectively measure IIS performance
against the twelve registry functional standards as a step toward
certification of IIS. The Work Group developed a set of proposed
evaluation criteria[^24] and pilot tested them in three volunteer sites.
These results identified concerns in the area of message processing
through the use of the Health Level Seven (HL7) protocol and in data
quality tracking and monitoring. Since the pilot testing, ongoing
efforts including large-scale roll out and implementation of IIS
certification have been delayed.

Reflecting the emphasis on adopting HL7 as a standard for exchanging
information, the number of IIS that can receive and process HL7 query
messages or vaccination records has increased from 7-8 in 2000 to 25 in
2005. The use of the HL7 standard promoted the exchange of several
thousand record exchanges following Hurricane Katrina (see below).

Since 2003, NIP has provided supplemental support to relatively advanced
IIS to achieve higher standards of data quality and to routinely analyze
IIS data for programmatic decision-making. Michigan and Arizona are the
two IIS Sentinel Sites receiving continuing support to monitor real-time
trends in immunization; determine how events have affected immunization
acceptance; answer questions concerning specific vaccines; and monitor
data quality in child and adolescent populations. Four other grantees
are funded to conduct similar Sentinel Site activities in children \<6
years of age.

An important aspect of ensuring appropriate functioning of registries
has been the activities of AIRA. AIRA is a membership organization to
promote the development and implementation of immunization registries as
an important tool in preventing and controlling vaccine preventable
diseases. The Association provides a forum through which registry
programs, interested organizations and individuals and communities
combine efforts and share knowledge that promotes registry activities as
a resource for IIS and immunization programs. AIRA goals are:

-   To promote and advocate for universal population-based registry
    standards.

-   To contribute to the development and maintenance of immunization
    registries.

-   To advocate for immunization registries through legislation, policy
    development and public information.

-   To build stronger partnerships with and between public and private
    registries, vendors, providers and federal agencies.

-   To collaborate with agencies and organizations, both domestic and
    international, on issues of concern to immunization registries.

In conjunction with the Association of Immunization Managers (AIM) and
CDC/NIP, AIRA formed a Programmatic Registry Operations Workgroup
(PROW), which reviewed ways in which IIS can and should support
immunization program activities. PROW published a "Standards of
Excellence" report, which was endorsed by NVAC in February,
2003.[^25][^26]

Implementation of the Standards of Excellence began in October 2003 with
the initiation of a national demonstration project of 13 IIS projects.
The experiences of the demonstration sites have been summarized in the
document "Centers of Excellence: Lessons Learned from the Programmatic
Registry Operations Workgroup (PROW) Demonstration Sites.[^27] The
standards of excellence have been implemented in 24 immunization
programs.

AIRA, in partnership with CDC/NIP, formed a Modeling of Immunization
Registry Operations Workgroup (MIROW) to develop a guidebook of best
practices for IIS. As a result of a survey of IIS, the first topic
selected was to examine how IIS should manage persons who had moved or
gone elsewhere (MOGE). Through a facilitated face-to-face meeting and
multiple teleconferences, current practices were analyzed and consensus

recommendations developed. These recommendations are presented as the
first chapter of the emerging "Best Practice" guidebook. The chapter
title is "Management of Moved or Gone Elsewhere (MOGE) Status and Other
Patient Designations in Immunization Information Systems."[^28]

Other useful AIRA products available at
[www.immregistries.org](http://www.immregistries.org/) are:

-   IIS-VAERS Collaboration for Vaccine Adverse Events Reporting

-   Healthy People 2010 Countdown / IIS Meeting the challenge

-   A Perspective on the Next Generation of Connecting for Health

-   Do You Have a Fundraising Plan? A Resource Guide for Immunization
    Registries

-   How Immunization Registries Can Make a difference: Advocacy at Your
    State and Local Level

-   Registries and Physicians: Creating a Partnership that Works!

In 2005, CDC partnered with AIRA to conduct a survey to guide
development of a research and evaluation agenda for IIS.[^29] Thirteen
research categories were identified and ranked in order of importance:

1.  Provider perspectives and needs

2.  Data quality

3.  Technical data exchange

4.  Increasing provider participation

5.  IIS cost and cost savings

6.  Benefits of IIS

7.  Accuracy of data

8.  IIS impact on coverage rates

9.  IIS use

10. Non-technical data exchange

11. Real-time data access and input

12. Data sharing between states

13. Factors affecting IIS population-based measurements

In 2005-2006, of the 62 CDC grantees with (or developing) IIS, 19 are
using software developed by the grantees themselves. The State of
Wisconsin contracted with Electronic Data Systems (EDS) for the
applications development of the Wisconsin Immunization Registry (WIR).
The Wisconsin Immunization Program has provided the WIR software to 12
entities. Scientific Technologies Corporation (STC) provides software to
nine. Envision Technology provides software to seven grantees (KS, NV,
and five island grantees). AMCI and HLN Consulting each provide software
to three IIS. Altarum (based on MI IIS), and Avanza/Humansoft each
provide software to two IIS. Consilience, EDS, the Indian Health
Service, TCI, and TRW each provide software to a single IIS, and for two
grantees, the vendor is unknown. Thus 21/62 IIS are using software based
upon the WIR product or STC.

As documented in the 2001 NVAC report, IIS have demonstrated their
utility in improving immunization coverage, supporting vaccine safety,
increasing timeliness of immunization, helping providers reach coverage
goals, studying effectiveness and efficiency, and keeping managed care
records up to date. Since then, many other articles have been published
regarding the strengths (and weaknesses) of IIS. A list of published
articles about IIS 2001-2006 is found in Appendix 2. Appendix 2 includes
the MMWR articles on national progress with IIS published each year by
CDC.

# Ensure sustainable funding for registries.

The level of federal support for IIS declined in the late 1990s and
reached a low of approximately \$12 million in 2000 (Figure 3).
Estimated funding in FY 2005 was approximately \$40.6 million, about the
same as in 1997. This total includes funding from Section 317 and from
VFC operational funds (\~29% of the total). Although overall Section 317
funds have been increasing, they are having to cover substantially
greater increases in funding needs as new vaccines are introduced and
other unexpected immunization program demands arise (e.g., Hurricane
Katrina, planning for pandemic influenza).

VFC operational funding is being used to support IIS activities but not
to as great an extent as initially envisioned by NVAC. As is true with
Section 317 funding, VFC operational funding is subject to annual
appropriations, and is not an entitlement as is VFC vaccine purchase.

Funding sources for the 56 state or city grantees in 2005 are shown
below.

[Funding source]{.underline} [Number]{.underline}

Section 317 50

State/local 27

CMS 10

Other federal 11

Emergency preparedness 7

Private 7

Nonprofit 3

Other 2

Medicaid funding to support the development of IIS became available
during 2000, but despite strong efforts to promote the development of
applications for funding, only 10 immunization program grantees have
been successful in receiving funds during FY 2005. These efforts have
not been successful primarily for the following reasons:

-   Lack of support at state or regional CMS offices;

-   Concerns about data ownership and infrastructure;

-   A difficult application process.

The 2001 NVAC report called for intensification of discussions with
insurers/health plans urging them to provide support for IIS. Financial
support for IIS from health plans and insurers has had limited success
probably because few IIS were mature enough to meet the data quality and
quantity demands of HEDIS. With recent state or city grantee data from
2005 indicating that more than 13 million children (or 56%) \<6 years of
age with two or more immunizations are participating in an IIS, the
situation now looks more promising. Almost 40% (22 of 56 state or city
grantees) now report child participation levels of 80% or more and some
health plans have started paying providers incentives of up to \$250 for
each child with a completed immunization history in an IIS. If this
practice can be promoted further, health plans get their HEDIS reports
for much less cost; immunization coverage increases; providers get
incentives to submit data; and completeness of immunization histories in
an IIS improves. As noted earlier, 85% of HMOs and PPOs responding to an
AHIP survey report they are currently sharing information with IIS.

Cost studies of IIS carried out before the 2001 NVAC report suggested an
annual cost of \$4-5/child. Since that time, registries have matured and
are increasingly web-based, so operational costs may be lower than
originally estimated. A recent study assessed the costs in a sample of
24 IIS around the country, stratified by functional status, number of
children enrolled, and whether the IIS had been developed as an
independent system or was integrated into a larger system.[^30] The
estimated annual cost per patient record (CPR) ranged from \$0.09 -
\$10.30 in operating IIS. About 20% of IIS had between 2.9-3.2 million
records and showed CPR estimates of \$0.09. Overall, CPR was highly
sensitive to local providers' participation. The authors estimated that
an additional \$75.6 million would need to be allocated nationwide over
the next five years in order to achieve the HP 2010 goal of 95%
participation in IIS.

A recently published study found a significant and meaningful
association between the level of Section 317 funding and vaccination
coverage. One of the important uses of Section 317 funding is to support
development and operation of IIS.[^31]

There has not been a specific IIS grant program enacted, as recommended
by NVAC in 2001.

# Newer uses of IIS

## *IIS and adolescent/adult immunization*

Increasing emphasis is being placed on immunization of adolescents, an
age group that does not regularly seek preventive care. IIS represent an
important tool to identify adolescents due/overdue for immunizations and
to generate reminder/recall notices. In 2005, 87% (49/56) of grantees
report containing information on adolescents in their IIS. 75% (42/56)
report containing information on persons [\>]{.underline}50 years of
age, and approximately 23% of persons in this age group are enrolled in
IIS.

## *IIS and Preparedness*

In March, 2006, CDC/NIP surveyed IIS grantees to assess the readiness of
IIS to respond to a pandemic flu outbreak. Of 35 respondents, 29 (83%)
answered that their IIS will be used for collecting individual vaccine
doses administered for pandemic flu. 34/35 indicated that the IIS
currently has the capability to collect vaccine doses for all ages.
22/35 indicated that using the IIS to collect flu vaccine data is part
of their state pandemic flu preparedness plan.[^32]

A dramatic example of the use of IIS in preparedness/disaster response
was the experience of the Louisiana Immunization Network for Kids
Statewide (LINKS), the Louisiana state IIS. Hurricane Katrina resulted
in the flooding of the central office of the state immunization program
and IIS in New Orleans. The back-up server in Baton Rouge was up and
running within 24 hours. Scientific Technologies Corporation (STC), the
software vendor, established a mechanism for allowing other authorized
IIS to query LINKS and access information about Louisiana children who
had been displaced. In the aftermath of hurricanes Katrina and Rita,
LINKS was accessed by IIS in every state in the nation (and five other
countries) and provided information in response to more than 55,000
out-of-state queries for records, which were then used for vaccination
and school entry. Within Louisiana, there were more than 100,000
successful queries for internally displaced children.[^33] Estimates are
currently being made of the dollar value of vaccines that did not have
to be purchased and administered because there was accurate information
available about the immunization status of displaced children.

Although the use of IIS following Hurricane Katrina provides a dramatic
example of the utility of IIS, it also underscores the difficulties of
interstate data sharing. Grantee IIS are developed using CDC-recommended
HL7 guidelines but despite the technical capability for interstate data
sharing, individual state laws regarding confidentiality or
re-disclosure of data may prevent data sharing in an efficient manner.
To address this issue, immunization projects need to enter into
individual memorandums of agreement (MOA) with other states in order to
allow the efficient transfer of data. Federal approaches to allow the
states the ability to share immunization and birth data without having
to enter into individual MOAs with other states might rectify this
problem.

## *IIS and vaccine shortages*

IIS can be used to evaluate the impact of vaccine shortages, monitor
compliance of providers with amended recommendations, and recall
children for vaccination once the shortage is over. For example, Allred
*et al* used data from the Michigan Child Immunization Registry (MCIR)
to assess the impact of the 2004 pneumococcal conjugate vaccine (PCV7)
shortage.[^34] During the shortage, CDC recommended that providers delay
administration of the third and fourth doses of PCV7 to healthy
children, in order to allow initiation of the vaccine series in all
children. Data from MCIR showed that PCV7 coverage for both the third
and fourth doses fell significantly in the month following the
recommendation, even though coverage for the third dose of DTaP and
first dose of MMR (which are administered at about the same time and
remained in good supply) remained constant. Data also showed that
coverage returned close to pre-shortage levels shortly after
recommendations to resume the normal schedule.

## *IIS and interoperability with other health information systems/health information exchanges (HIE)*

IIS are among the most mature public health information systems that
bridge the public health/clinical care divide. However, as long as they
serve the single purpose of monitoring immunizations, their utility will
be limited. Since 1999-2000, efforts have been supported by the Robert
Wood Johnson Foundation, the Genetics Services Branch (Division of
Services for Children with Special Health Needs, Maternal and Child
Health Bureau, Health Services Administration \[HRSA/MCHB\]) to
integrate IIS with other child information systems, notably vital
registration, newborn dried bloodspot screening (NDBS), and early
hearing detection and intervention (EHDI). These programmatic areas were
selected because they are universally recommended (even mandated), begin
shortly after birth, involve both the public and private sectors, and
are time sensitive (i.e., poor outcomes may be associated with
delays).[^35]^,^[^36] Twenty-one states have been funded and are at
varying stages of integration. In this arena, integration refers to the
integration of information as it is presented to the user, not to the
background hardware or software. A variety of different approaches is
being used to accomplish the integration.

At the national level a Framework for Strategic Action in delivering
consumer-centric and information-rich health care has been published by
the Office of the National Coordinator for Health Information
Technology.[^37] The President has stated (in 2004) that "Within 10
years, every American must have a personal electronic medical
record."[^38] Health Information Exchanges (HIE) are being established
around the country to provide a means of sharing health information
among health care providers, healthcare institutions, and health
departments.[^39] IIS should play major roles in the design and
implementation of these exchanges.

# Conclusions and recommendations

Considerable progress has been made since NVAC's 2001 IIS progress
report. IIS have demonstrated their effectiveness in improving
immunization services and immunization coverage. They have also
demonstrated their worth in dealing with vaccine shortages and coping
with disasters. They will be important components of addressing pandemic
influenza or other threats and should play major roles in the emerging
Health Information Exchanges. Most IIS now have the ability to accept
information on persons of all ages.

More than one-half of the nation's children are now participating in
population-based IIS and it appears possible to achieve the 2010
objective. However, significant challenges remain, including assuring
sustainable funding for IIS and assuring that IIS will be able to
communicate with each other and with other information systems,
including electronic medical records and health information exchanges.

***Recommendations and Action Steps***

## 

## Ensure appropriate protections of privacy and confidentiality for individuals and security for information included in the registry.

*NVAC Recommendations:*

## Continue to ensure that IIS comply with HIPAA and other applicable laws/regulations governing privacy, confidentiality, and security, e.g., PHIN standards. 

## DHHS should work with the Department of Education to ensure that FERPA does not impede the sharing of immunization information among schools, healthcare providers, health departments, and IIS.

## Federal legislation to establish a minimum set of standards and regulations for inter-state sharing of immunization data would be very helpful. 

## 

## *Action Steps:*

1.  CDC should continue to monitor privacy and confidentiality
    developments (including legislation) at state and local levels to
    identify new issues and to resolve existing issues.

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2.  CDC should fund and implement the certification protocol developed
    by the TWG to ensure that an IIS has implemented written
    confidentiality policies and procedures, including administrative
    and technical practices to protect health care information. The
    policies and procedures should be consistent with applicable federal
    (e.g. HIPAA), state and local laws and regulations as recommended in
    the updated "*Community Immunization Registries Manual: Chapter II:
    Confidentiality,"* except where these specifications conflict with
    applicable law.

3.  CDC should develop high-level guidelines to address all privacy,
    confidentiality, and security concerns regarding IIS release of
    information.

4.  IIS partners should establish a working group to determine the
    feasibility of using the Model Interstate Immunization Information
    Sharing Statute developed by the George Washington University
    Department of Health Policy and Every Child By Two as a basis for
    Federal legislation for inter-state sharing of immunization data.

## Ensure participation of all immunization providers and recipients 

*NVAC Recommendations:*

## IIS Research and evaluation activities should be conducted to incorporate health care providers' perspectives and needs into IIS development.

## Ensure appropriate IIS' that are useful to all providers, both public and private. Providers and interested community groups should be involved throughout registry development and implementation.

## IIS performance measurements should be developed that demonstrate IIS value to all providers, both public and private.

## Continue to pursue partnership opportunities with professional organizations and other key stakeholder groups for collaboration on strategies to bring IIS into provider practices, to include incentives for participation.

## Ensure recipients/parents have easy access to their IIS immunization information.

## 

## *Action Steps:*

## NCIRD should continue to collaborate with partner organizations to conduct research on: factors that affect provider participation in and use of an IIS; the effects of legislative and other approaches to increase participation; the illustration of provider use of IIS; and provider outreach as well as IIS evaluation studies.

## 2.2 NCIRD should use focus groups of public and private immunization providers or other methods to gather crucial information about attitudes and thoughts related to IIS.

## 2.3 NCIRD should promote the use of assessments of private practice needs in developing or enhancing an IIS to ensure that IIS are easy-to-use and convenient systems. These may include added value components such as alternatives to manual data entry and the ability to accept batch data and EMR interfaces.

## 2.4 NCIRD should work with IIS stakeholders to design and implement a training plan to include a variety of venues and options for IIS training of providers and other IIS users.

## 2.5 NCIRD should work with IIS stakeholders to develop performance indicators that will demonstrate the value of IIS to all providers.

6.  NVPO should convene a meeting of representatives of state/local
    health departments, health insurers, health plans, CMS, professional
    organizations, and others to deliberate the pros and cons of
    legislative and other approaches to increase provider participation
    in an IIS.

## Ensure appropriate functioning of registries

*NVAC Recommendations:*

## Finalize and implement the approach to certification of IIS by promoting third party evaluation of IIS functionality, performance, and data quality assessment. 

## Resolve remaining issues on exchange of information between IIS.

## Promote integration of IIS with electronic medical records, other health information systems, and Health Information Exchanges.

## Promote the expansion and utility of IIS. One such expansion might be to include persons of all ages in an IIS.

## Promote the continued development, implementation, and maintenance of standards pertaining to immunization registries

## Promote the central role of IIS in response to pandemic influenza or other public health emergencies.

## Encourage further evaluation and feasibility studies that use IIS data to support national vaccination coverage data needs.

## Promote enhanced immunization program management by analysis and use of IIS data for program evaluation, quality control, and assessment to meet state and local needs (e.g., outbreak control, VFC functions, up-to-date analyses, new vaccine uptake, identifying pockets of need, vaccine management and inventory functions, school assessments). 

5.  Collaborate with Office of the National Coordinator on Health
    Information Technology (ONC) to ensure Immunization Information
    System reporting standards are incorporated into Electronic Medical
    Records that receive federal funds or that are certified by the ONC.

> *Action steps*

1.  NCIRD should further develop IIS certification protocols as program
    needs or technology evolves; resources should be made available to
    sponsor, support, and conduct IIS certification.

2.  NCIRD should support technical and analytic staff at the state and
    national level to promote the adoption of information exchange
    standards and technology for immunization needs with medical records
    systems. As necessary it should encourage vendors for billing
    systems, patient management systems, and EMRs to negotiate for the
    development of discount rates for interactions between EMR and IIS
    interfaces.

3.  NCIRD should expand the functional growth in IIS in a variety of
    areas and develop a clear rationale for providers why each new data
    element is important:

-   Include persons of all ages for enrollment and reporting to the
    system.

-   Change the following data variables from optional to required
    status:

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-   patient race/ethnicity;

-   patient birth order for multiple births.

> Add new optional data variables:

-   historical vaccination flag indicator;

-   VFC eligibility;

-   history of varicella disease indicator;

-   patient status indicators that include active, inactive, MOGE, and
    other classifications.

    1.  Promote the adoption of a guidebook and best practices for IIS
        as started by the CDC/NIP and AIRA/MIROW workgroup to adopt
        uniform operational guidance and quality control procedures that
        ensure good data quality.

    2.  Further define essential registry system functions and
        attributes to support program needs.

    3.  Enable intra- and inter-registry record exchange with standard
        (e.g., HL7) messages.

    4.  Adopt system security standards to address both technical and
        administrative issues and to ensure that access is limited to
        authorized persons

    5.  NCIRD and partners should create IIS educational materials such
        as guidebooks, and/or training courses to assist IIS programs
        and program managers with operations promotion, use and
        management of the IIS

    6.  NCIRD should encourage the adaptation of existing IIS, to ensure
        that they can provide required information for CDC-developed
        systems for tracking of persons receiving medical
        countermeasures during immunization related public health
        emergencies such as outbreaks of pandemic influenza and
        smallpox. Specifically, NCIRD should encourage IIS use for
        appropriate roles in preparedness exercises and drills.

    7.  NCIRD should assess and expand the role of IIS in supporting
        national immunization coverage methods such as the National
        Immunization Survey and IIS Sentinel Site projects.

    8.  NCIRD should encourage the use of IIS in support of the Vaccine
        Adverse Event Reporting System or other adverse event monitoring
        approaches

    9.  NCIRD should require immunization program grantees to provide an
        annual report that documents the role of the IIS in support of
        program functions, such as coverage estimations, role in
        outbreak control, surveillance, adverse events, VFC functional
        requirements, and completeness of immunization information on
        participants in the IIS.. Grantees should use the AIRA PROW
        document to assist in utilizing IIS data to assist with
        Immunization program operations.

    10. NVPO and CDC should convene a meeting with the Office of the
        National Coordinator on Health Information Technology (ONC) to
        ensure Immunization Information System reporting standards are
        incorporated into Electronic Medical Records that receive
        federal funds or that are certified by the ONC.

    11. DHHS should pursue approaches that would allow states (and
        territories) to share immunization and birth data without having
        to enter into individual Memorandums of Agreement with other
        states.

4.  **Ensure sustainable funding for registries**:

*NVAC Recommendations:*

1.  Assure sustaining funding for IIS:

    -   Continue and increase support for IIS through the 317 program

    -   Increase use of VFC operational funds

    -   Increase support from CMS

    -   Intensify discussions with insurers/health plans urging them to
        provide support for IIS (e.g., \$5/year/person covered)

    -   Develop a 5-year \$60 million/year grant program to support
        further development and initial operation of IIS (this could be
        handled through a targeted increase in 317 funding).

2.  Continue to update and expand studies of costs and benefits of IIS.

> *Action steps*

1.  NVPO should convene a meeting of representatives of state/local
    health departments, health insurers, health plans, CMS, professional
    organizations, etc., to deliberate the pros and cons of provider
    performance incentives based on the completeness of immunization
    data available in an IIS.

2.  NVPO should convene a meeting of representatives of health insurers
    and health plans to develop a statement noting the value of IIS and
    urging financial support for IIS.

3.  NVPO should convene a meeting with CMS to develop and implement
    guidance for immunization program grantees on how to access CMS
    funds for IIS development and operations.

4.  CDC should expand the sponsorship of research and evaluation studies
    of costs and benefits of IIS.

5.  Congress should assure that CDC has adequate funds and staff to
    continue to provide leadership and technical support.

> []{#__RefHeading___Toc146008933 .anchor}Glossary of acronyms

AHIP -- America's Health Insurance Plans

AIM -- Association of Immunization Managers

AIRA -- American Immunization Registry Association

CDC -- Centers for Disease Control and Prevention

DTaP -- Diphtheria and Tetanus toxoids and acellular Pertussis vaccine

ECBT -- Every Child By Two

EDS -- Electronic Data Systems

EHDI -- Early Hearing Detection and Intervention

FERPA -- Family Educational Rights and Privacy Act

HEDIS -- Health Plan Employer Data and Information Set

HIPAA -- Health Insurance Portability and Accountability Act

HL7 -- Health Level 7

HMO -- Health Maintenance Organization

HP 2010 -- Healthy People 2010

IIS -- Immunization Information Systems

IRAR -- Immunization Registry Annual Report

LINKS -- Louisiana Immunization Network for Kids Statewide

MCIR -- Michigan Childhood Immunization Registry

MIROW -- Modeling of Immunization Registry Operations Workgroup

MMR -- Measles, Mumps, Rubella vaccine

MOGE -- Moved Or Gone Elsewhere

NCIRD -- National Center for Immunization and Respiratory Diseases

NDBS -- Newborn Dried Bloodspot Screening

NIP -- National Immunization Program

NVAC -- National Vaccine Advisory Committee

ONCHIT -- Office of the National Coordinator on Health Information
Technology

PCV7 -- Pneumococcal Conjugate Vaccine -- 7 valent

PHIN - Public Health Information Network

PPO -- Preferred Provider Organization

PROW -- Programmatic Registry Operations Workgroup

STC -- Scientific Technologies Corporation

TWG - Technical Working Group

VAERS -- Vaccine Adverse Event Reporting System

VFC -- Vaccines for Children

WIR -- Wisconsin Immunization Registry

# Table 1 Recommendations from December 2000 Report

> 1\. Ensure appropriate protections of privacy and confidentiality for
> individuals and security for information included in the registry.

a.  Continue efforts to ensure that all registries implement policies
    and procedures that meet minimum specifications for protecting
    privacy and confidentiality.

b.  Monitor implementation of minimum specifications.

c.  Further explore and develop privacy and confidentiality guidelines
    for interstate exchange of information.

d.  Continue to ensure that privacy and confidentiality specifications
    are consistent with evolving HIPAA regulations.

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2.  Ensure participation of all immunization providers and recipients.

    a.  Intensify efforts with major payers and plans to go beyond mere
        endorsement and obtain commitment to participation.

    b.  Continue dissemination of information about the utility of
        registries.

    c.  Continue demonstration of registries' decision support functions
        at the provider level.

    d.  Additional research on the impact of registry use on workflow in
        providers' offices.

    e.  Additional research on the impact of registry use on
        parents/families.

3.  Ensure appropriate functioning of registries.

    a.  Continue advocacy and dissemination of the HL7 standards and the
        ACIP algorithm (perhaps making them required conditions for
        continued 317 funding).

    b.  Finalize and implement approach to certification of registries.

    c.  Disseminate information about how registries are being used to
        improve immunization coverage and immunization practices (this
        also serves as an important means of recruiting providers).

    d.  Continue to provide technical assistance.

    e.  Assure quality of data in registries.

    f.  Resolve remaining issues on exchange of information between
        registries.

4.  Ensure sustainable funding for registries.

    a.  Continue and increase support for registries through the 317
        program.

    b.  widely promote use of Medicaid funds for registries and monitor
        implementation; explore possible use of CHIP/S-CHIP
        administrative funds.

    c.  Obtain approval to use VFC operational funds for registries.

    d.  Intensify discussions with insurers/health plans urging them to
        provide support for registries (i.e., \$5/year/child covered)

    e.  Develop a 5-year \$60 million/year grant program to support
        further development and initial operation of registries (this
        could be handled through a targeted increase in 317 funding).
        This is justified by the cost-effectiveness of registries.

    f.  Continue to update and expand studies of costs and benefits of
        registries

# Table 2 Summary of Best Practices and Successful Strategies by Barrier

Barrier #1: Cost and/or time of data entry and retrieval

-   Include assessment of private practice needs in requirements
    analysis before development of registry and periodically thereafter.

-   Use focus groups representing target participants to gather crucial
    information about attitudes and thoughts related to immunization
    registries.

-   Design an easy-to-use, web-based system with the added value
    components that practitioners want.

-   Provide alternatives to manual data entry, such as the ability to
    accept batch data and EMR interfaces.

Barrier #2: Practices are too busy to consider a new procedure and
anticipate difficulty integrating registry use into business processes

-   Build relationship with key person in practice, communicate
    consistently and regularly to identify the practice's needs and how
    the registry can help.

-   Work with key person in practice to develop process improvements and
    office procedures that integrate the registry and allow its use to
    be a time-savings activity.

-   Cultivate trust and partnership with health care community to
    understand their needs and concerns, building relationships with
    professional associations, such as AAP, and recruiting influential
    practices early.

-   Develop a communication plan that includes newsletters and other
    tools that feature providers who have successfully integrated the
    on-line registry into their work flow.

-   Conduct user group meetings that are interactive and encourage
    sharing information among practices about strategies to integrate
    the registry.

Barrier #3: Cost and/or time to train staff to participate in registry,
including clinic staff turnover

-   Provide variety of venues and options for training:
    onsite/in-person, group/regional trainings, video training on the
    web or CDs, Webex, on-line manuals, etc.

-   Plan for staff turnover in the practices---be ready to provide
    training to new staff.

-   Have CD-ROM or on-line video that educates staff about value of
    using the registry.

-   Provide toll-free *Help Desk* service to assist with specific
    questions and provide phone training as needed.

-   Design training in modules, i.e., view-only, basic, advanced, to fit
    the needs and time-availability of staff.

Barrier #4: Concerns about privacy, confidentiality, and HIPAA

-   Design a parent notification system to inform parents about the
    registry and their child's inclusion (depending on state law).

-   Analyze the HIPAA Privacy Rule in relation to the registry's HIPAA
    status, having explanatory handouts available to practices.

-   Include references to HIPAA and other state and federal laws in
    registry's provider information sharing agreements.

Barrier #5: Provider does not see any value to their practice

-   Ensure stakeholder and user involvement in developing the technical
    requirements as well as the marketing approach and messages.

-   Use focus groups representing target participants to gather crucial
    information about attitudes and thoughts related to immunization
    registries.

-   Promote registry as a data tool that helps practices save time by
    reducing number of reports to submit to state, retrieve information
    quickly, run reminder-recall, etc.

Barrier #6: Issues relating to interfacing with other systems, including
working with vendors and cost to providers

-   Work with billing/PMS/EMR vendors on behalf of a group of clinics to
    negotiate for development of export or interface and to get
    discounted rates.

-   Provide funding to cover vendor charges to practices.

-   Provide registry staff liaison as point person with vendors and
    providers.

-   Ensure a supportive IT staff backing the registry program, with the
    skills to deal with the technical side of importing and exporting
    data.

# Table 3 Minimum functional standards for IIS

1)  Electronically store data on all NVAC-approved core data elements.

2)  Establish a registry record within 6 weeks of birth for each newborn
    child born in the catchment area.

3)  Enable access to and retrieval of immunization information in the
    registry at the time of encounter.

4)  Receive and process immunization information within 1 month of
    vaccine administration.

5)  Protect the confidentiality of health care information.

6)  Ensure the security of health care information.

7)  Exchange immunization records using Health Level Seven (HL7)
    standards.

8)  Automatically determine the routine childhood immunization(s)
    needed, in compliance with current ACIP recommendations, when an
    individual presents for a scheduled immunization.

9)  Automatically identify individuals due/late for immunizations(s) to
    enable the production of reminder/recall notifications.

10) Automatically produce immunization coverage reports by providers,
    age groups, and geographic areas.

11) Produce official immunization records.

12) Promote accuracy and completeness of registry data.

**Table 4**

**Support for Immunization Information Systems**

**June 2000**

Formal Resolutions:

-   AAP (American Academy of Pediatrics)

-   AMA (American Medical Association)

-   APHA (American Public Health Association)

-   AOA (American Osteopathic Association)

-   National Medical Association

Letters of Support or Endorsement:

-   AAHP (American Association of Health Plans)

-   ACPM (American College of Preventive Medicine)

-   ASHA (American School Health Association)

-   ASTHO (Association of State and Territorial Health Officers)

-   IPAVAPP (Informed Parents Against Vaccine Associated Paralytic
    Polio)

-   NACCHO (National Association of County and City Health Officials)

-   NAPNAP (National Association of Pediatric Nurse Associates and
    Practitioners)

-   NASN (National Association of School Nurses)

-   NSBA (National School Boards Association)

-   USDoE (US Department of Education)

Organizations Collaborating With or Supporting Registries:

-   Aetna/US Healthcare

-   AKC (All Kids Count)

-   AMIA (American Medical Informatics Association)

-   CIRSET (Committee on Immunization Registry Standards for Electronic
    Transmission)

-   CPRI (Computerized Patient Record Institute)

-   ECBT (Every Child by Two)

-   Epic Systems

-   HCFA/Medicaid (Health Care Financing Administration)

-   HL7 (Health Level 7 Standards Setting Organization)

-   Kaiser Permanente

-   NVAC (National Vaccine Advisory Committee)

-   SMS (Shared Medical Systems)

# Appendix 1 Immunization Registry Strategic Plan 2002-2007

-   Focus Area 1 - Partnerships

    -   Goal - Forge new, and strengthen existing, partnerships with IIS
        stakeholders to implement the plan

        -   Objective - Identify all stakeholder organizations and
            elicit their commitment to work toward Healthy People 2010
            IIS objective

-   Focus Area 2 - Provider Participation

    -   Goal - Promote the use of IIS as a standard practice in the
        delivery of health services

        -   Objective - Identify, develop, and promote strategies to
            support recruitment and retention of immunization providers
            participating in IIS

-   Focus Area 3 - Education

    -   Goal - Educate stakeholders about the use and benefits of IIS

        -   Objective - Develop and implement specific strategies for
            stakeholder education, including developing a central
            mechanism for sharing educational materials and best
            practices

        -   Objective - Develop and implement specific strategies for
            internal NIP staff education, including developing a central
            mechanism for sharing educational materials for ISRB staff

-   Focus Area 4 - Data Quality

    -   Goal - Have IIS data be the "gold standard" for all stakeholders

        -   Objective - Ensure quality data by identifying, developing,
            implementing, and promoting standardized data quality
            methodologies

-   Focus Area 5 - Data use

    -   Goal - Use IIS data for decision making

        -   Objective - Identify and promote effective uses of IIS data

-   Focus Area 6 - Privacy & Confidentiality

    -   Goal - Provide support in the formulation of responses to
        applicable law

        -   Objective - Identify and share laws applicable to IIS

        -   Objective - Monitor current federal legislative and
            rule-making activity that could impact IIS

        -   Objective - Assess the extent to which IIS meets privacy and
            confidentiality guidelines

        -   Objective - Identify and address legal barriers to enable
            inter- and intra-state IIS data exchange

-   Focus Area 7 - Technical Capabilities

    -   Goal - Promote integrated, secure, easy-to-use immunization
        information systems that contain timely and quality data

        -   Objective - Monitor, evaluate, and report emerging industry
            trends that will influence IIS operations

        -   Objective - Monitor, evaluate, develop, and share IIS
            progress and best practices

        -   Objective - Provide technical assistance to promote the
            advancement of IIS projects in the US

        -   Objective - Maintain a set of standards for functioning and
            using IIS and communicate changes

-   Focus Area 8 - Integration

    -   Goal - Promote appropriate integration and linkages of IIS in
        health information systems

        -   Objective - Promote active collaboration with all
            appropriate federal information technology-related projects
            that can help to advance IIS operations

-   Focus Area 9 - Immunization Registry Support Branch Staff

    -   Goal - Obtain sufficient staff and accompanying resources to
        support all objectives of the strategic plan

        -   Objective - Assess current staff responsibilities and
            reorganize to maximize strategic plan support

    -   Goal - ensure staff has appropriate skills knowledge, and
        opportunity to support the objective of the strategic plan

        -   Objective - Provide timely training to ensure all staff have
            technical and programmatic skills needed to support
            strategic plan objectives

        -   Objective - Create an environment that encourages openness
            and innovation and facilitates sharing of experience and
            knowledge among branch members

-   Focus Area 10 - Funding

    -   Goal - Assist projects in obtaining diverse, sustainable sources
        of funding for IIS

        -   Objective - Identify existing and potential funding sources
            and the processes required to get the funding

        -   Objective - Participate in 317-grant review process to
            affect funding decisions regarding IIS

    -   Goal - ensure efficient use of NIP IIS funds

        -   Objective - Hold projects accou9ntable for NIP IIS funds
            awarded

    -   Goal - Obtain sufficient funding for ISRB to support goals of
        the strategic plan

        -   Objective - Obtain CDC management support in the budgetary
            process to ensure sufficient branch funding

# Appendix 2 IIS Publications 2001-2007

**[2007]{.underline}**

Kelly JS, Zimmerman LA, Reed K, Enger KS. Immunization Information
Systems National Research and Evaluation Agenda. J Public Health
Management Practice, 2007, 13(1), 35-38 (in press).

Bartlett DL, Washington ML, Thurston N, Bryant A, Perfili CA. Cost
savings associated with using immunization information systems for
Vaccines for Children administrative tasks. J Public Health Management
Practice (in press).

Enger K and Stokley S. Meningococcal conjugate vaccine uptake, measured
by Michigan\'s immunization registry. Journal of Adolescent Health (in
press).

Urquhart GA, Williams W, Tobias J, Welch FJ. Immunization Information
Systems Use During a Public Health Emergency in the United States. J
Public Health Management Practice (in press).

**[2006]{.underline}**

Centers for Disease Control and Prevention. Influenza Vaccination
Coverage Among Children Aged 6--23 Months --- Six Immunization
Information System Sentinel Sites, United States, 2005--06 Influenza
Season. MMWR. 2006;55:1329-1330.

Centers for Disease Control and Prevention. Immunization Information
System Progress \-- U.S., 2005. MMWR. 2006;55:1327-1329.

Bartlett DL, Molinari NM, Ortega-Sanchez IR, Urquhart GA. Economics of
immunization information systems in the United States: assessing costs
and efficiency. Cost Effectiveness and Resource Allocation. 2006;4:15.

Khare M, Piccinino L, Barker LE, Linkins RW. Assessment of immunization
registry databases as supplemental sources of data to improve
ascertainment of vaccination coverage estimates in the National
Immunization Survey. Arch Pediatr Adolesc Med 2006; 160:838-842.

Allred NJ, Stevenson JM, Kolasa M, Bartlett DL et al. Using registry
data to evaluate the 2004 pneumococcal conjugate vaccine shortage. Am J
Prev Med. 2006;30:347-350.

Clark SJ, Cowan AE, Bartlett DL. Private provider participation in
statewide immunization registries. BMC Public Health. 2006;6:33

Irigoyen MM, Findley S, Wang D, Chen S, et al. Challenges and success of
immunization registry reminders at inner-city practices. Ambul Pediatr.
2006;6:100-104.

Kolasa MS. Chilkatowsky AP, Clarke KR, Lutz JP. How complete are
immunization registries? The Philadelphia story. Ambul Pediatr.
2006;6:21-24.

Watson JT, Ramirez E, Evens A, Bellini WJ, et al. Measles immunization
coverage determined by serology and immunization record from children in
two Chicago communities. Public Health Rep. 2006;121:262-269.

**[2005]{.underline}**

Anon. The immunization sentinel site program in Michigan. Mich Med.
2005;104:24.

Centers for Disease Control and Prevention. Immunization Information
System Progress \-- U.S., 2004. MMWR. 2005;54:1156-1157.

Centers for Disease Control and Prevention. Immunization Information
System Progress \-- U.S., 2003. MMWR. 2005;54:722-724.

Heitz R. Wisconsin's immunization registry. Wisconsin Med J.
2005;104:83-86.

Hoyle T. What information should be integrated with the childhood
immunization registry? Mich med. 2005;104:18-19.

Kolasa MS, Cherry JE, Chilkatowsky AP, Reyes DP, Lutz JP. Practice-based
electronic billing systems and their impact on immunization registries.
J Public Health Management Practice. 2005;11:493-499.

Ong G, Hoon HB, Ong A, Chua LT, et al. Creating and validating a
pneumococcal vaccination registry. AMIA Annual Symp Proc. 2005;201-205.

Orlova AO, Dunnagan M, Finitzo T, Higgins M, et al. Electronic health
record - public health (EHR-PH) system prototype for interoperability in
21^st^ century healthcare systems. AMIA Annual Symp Proc. 2005;575-579.

Williams W, Lyalin D, Wingo PA. Systems thinking: What business modeling
can do for public health. J Public Health Management Practice.
2005;11:550-553.

**[2004]{.underline}**

Callahan JM, Reed D, Meguid V, Wojcik S, Reed K. Utility of an
immunization registry in a pediatric emergency department. Pediatr Emerg
Care 2004;20:297-301.

Centers for Disease Control and Prevention. Immunization Registry
Progress \-- U.S., Jan-Dec 2002. MMWR, 2004;53:431-433.

Daley MF, Barrow J, Pearson K, Crane LA, et al. [Identification and
Recall of Children with Chronic Medical Conditions for Influenza
Vaccination](http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14702491&dopt=Abstract).
Pediatrics, 2004;113:e26-33.

Fehrenbach SN, Kelly JC, Vu C. Integration of child health information
systems: current state and local health department efforts. J Public
Health Manag Pract. 2004;11:S30-35.

Glazner JE, Beaty BL, Pearson KA, Lowery NE, Berman S. [Using an
immunization registry: effect on practice costs and
time.](http://www.immregistries.org/public.php/KSR/ksrMain.php?MainButton=Details&id=196)
Ambul Pediatr 2004;4:34-40.

Hinman AR. Tracking immunization: Registries become more crucial as
vaccination schedules become more complex. Ped Annals 2004;33:609-615.

Hinman AR, Atkinson D, Diehn TN, Eichwald J, et al. Principles and core
functions of integrated child health information systems. J Public
Health Manag Pract. 2004;11:S52-56.

Hoyle T, Swanson R. Assessing what child health information systems
should be integrated: the Michigan experience.. J Public Health Manag
Pract. 2004 Nov; Suppl:S66-71.

Irigoyen M, Findley SE, Chen S, Vaughan R, et al. Early Continuity of
Care and Immunization Coverage. Ambul Pediatr 2004;4:199-203

Kempe A, Beaty BL, Steiner JF, Pearson KA, et al. The regional
immunization registry as a public health tool for improving clinical
practice and guiding immunization delivery policy. Am J Public Health.
2004;94:967-972.

LeBaron CW, Starnes DM, Rask KJ. The impact of reminder-recall
interventions on low vaccination coverage in an inner-city population.
Arch Pediatr Adolesc Med. 2004;158:255-261.

Papadouka V, Schaeffer P, Metroka A, Borthwick A, et al. Integrating the
New York citywide immunization registry and the childhood blood lead
registry. J Public Health Manag Pract. 2004;11:S72-80.

Reed K, Ilardi D. Designed to expedite: immunization registry
information systems. School Nurse News. 2004;21:18-21.

Saarlas KN, Hinman AR, Ross DA, Watson WC Jr, et al. All Kids Count
1991-2004: developing information systems to improve child health and
the delivery of immunizations and preventive services. J Public Health
Manag Pract. 2004;11:S3-15.

Zavolinsky J. Immunization registries boost rates and improve quality.
AHIP Cover. 2004 Nov-Dec; 45 (6):52-5.

**2003**

Ashkar SH, Dales LG, Averhoff F, Shefer A, et al.. The effectiveness of
assessment and referral on immunization coverage in the special
supplemental nutrition program for women, infants, and children. Arch
Pediatr Adolesc Med 2003;157:456-462.

Davidson AJ, Melinkovich P, Beatty BL, Chandramouli V, et al.
Immunization registry accuracy. Improvement with progressive clinical
application. Am J Prev Med 2003;24:276-280.

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children in child care centers up to date for immunizations? Ambul
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Lafferty D, Gleason-Comstock J. The Common Denominator: Establishing a
Provider Database. Am J Prev Med 2003;25:101-106.

Miller PL, Frawley SJ, Sayward FG. Exploring the utility of demographic
data and vaccination history data in the deduplication of immunization
registry patient records. J Biomed Inform 2001;34:37-50.

Saarlas KN, Edwards K, Wild E, Richmond P. Developing performance
measures for immunization registries. J Public Health Manag Pract
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Williams G, Bartlett DL, Linkins L. An overview of immunization registry
systems and  practices in the U.S.A.  Vaccines: Children and Practice
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**2002**

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registry data completeness in Bexar County, Texas. Am J Prev Med
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Daley MF, Steiner JF, Brayden RM, Xu S, et al. Immunization
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Fontanesi JM, Flesher DS Jr, De Guire M, Lieberthal A, Holcomb K. The
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Gaudino JA, deHart MP, Cheadle A, Martin DP, et al. Childhood
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Smith RE, Eden AN. Assessing immunization rates in an ambulatory care
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Centers for Disease Control and Prevention. Progress in Development of
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Heijbel H, Jefferson T. Vaccine safety\--improving monitoring. Vaccine
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Horlick GA, Beeler SF, Linkins RW. A review of state legislation related
to immunization registries. Am J Prev Med 2001;20:208-213.

Kempe A, Steiner JF, Renfrew BL, Lowery E, et al. How much does a
regional immunization registry increase documented immunization rates at
primary care sites in rural Colorado? Ambul Pediatr 2001;1:213-216.

Ludwig-Beymer P, Hefferan C. Evaluation of Baby Advocate, a childhood
immunization reminder system. J Nurs Care Qual 2001;16:15-23.

Miller PL, Frawley SJ, Sayward FG. Exploring the utility of demographic
data and vaccination history data in the deduplication of immunization
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Narramore J. Immunization status of 2-year-old children, year 2000
survey results. Tenn Med 2001;94:139-140.

Rask KJ, LeBaron CW, Starnes DM. The costs of registry-based
immunization interventions. Am J Prev Med 2001;21:267-271.

Renfrew BL, Kempe A, Lowery NE, Chandramouli V, et al. The impact of
immunization record aggregation on up-to-date rates\--implications for
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Wilcox SA, Koepke CP, Levenson R, Thalheimer JC. Registry-driven,
community-based immunization outreach: a randomized controlled trial. Am
J Public Health 2001;91:1507-1511.

# Figure 1 Percentage of children \<6 participating in IIS December 31, 2005

![](media/image1.wmf){width="5.9944444444444445in"
height="4.418055555555555in"}

# Figure 2 Percentage of private provider sites participating in IIS December 31, 2005

![](media/image2.wmf){width="5.9944444444444445in"
height="4.418055555555555in"}

# Figure 3 CDC funding for IIS, 1995-2005

> ![](media/image3.wmf){width="6.392361111111111in"
> height="4.372916666666667in"}

# References

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