October 28, 2002

1
October 28, 2002 Philadelphia, Pennsylvania
2
Growing, Connecting, and Protecting through
Immunization Registries

• Walter A. Orenstein, M.D.
• Director
• National Immunization Program
• Centers for Disease Control and Prevention

3
Our Expectations are High

• Increase to 95 the proportion of children aged
  5 years old and younger who participate in fully
  operational immunization registries.
• Healthy People 2010 Objective for Registries

4
Meeting the Expectation

• Progress to date
• Important elements for building registry success
• Benefits and contributions of immunization
  registries
• The future

5
Children lt 6 years with 2 Immunizations, 2001
Overall 44
Source National Immunization Program Annual
Report, 2001
6
Important Elements for Building Registry Success

• Provider participation
• Data quality
• Data use
• Parent/guardian participation
• Privacy and confidentiality
• Adequate resources and funding

7
Data Quality

• High quality data are critical for fostering
  provider participation
• Providers need to know registry participation
  rates
• Registries need to have complete and accurate
  records
• There needs to be only one record for each child
• CDCs de-duplication toolkit
• www.cdc.gov/nip/registry/dedup/dedup.htm

8
Improving Data Quality

• Use NIS to assess registry data quality and
  participation rates
• NIP to Pilot test in 6 IAPs
• Arizona (Maricopa County and rest of Arizona)
• Michigan (Detroit and rest of Michigan)
• Oklahoma
• Washington, D.C.

9
Data Use

• Develop and implement systems that provide needed
  and useful data
• Provides quick access to complete immunization
  histories
• Enables providers to identify the immunization
  needs of individual children

10
Data Use

• Identify and document evidence that highlights
  the value and benefits of registry participation,
  for example
• Economic benefits
• Ease of use
• Publish in lay and peer review press
• Educate providers that the success stories are
  the rule not the exception

11
The Benefits and Contributions of Immunization
Registries
12
Tangible Benefits of Registry Data

• Registries can help quickly identify how
  immunization recommendations are being
  implemented.
• Registries can quickly identify impact of vaccine
  delays and shortages.

13
Use of an Immunization Registry to Track
Hepatitis B Immunization
Hep B given 0-56 days after birth
Thimerosal
700
and Hep B
Hep B given 0-5 days after birth
600
500
T-free widely
400
availableVFC
Number of Children
300
T-free available
in Hospitals
200
100
0
02
05
08
11
14
17
20
23
28
29
32
35
38
41
44
47
50
01
04
07
10
13
16
19
22
25
28
31
1999
2000
Week
Source Immunization ALERT (Oct 2000)
Note Vital Records reported hospital Hep B1 to
ALERT since Nov 1999
14

15
Tangible Benefits continued. . .

• Registries greatly foster the identification and
  notification of children with deferred
  vaccinations (e.g., due to a vaccine shortage).
• 48 (75) of 64 grantees have reminder/recall
  ability
• 23 (48) of 48 grantees made a special effort
  to contact the parents of deferred children
• Registries are an effective way to identify
  children who do not meet school vaccination
  requirements.
• Example Washington, D.C., registry identified
  about
• 20,000 children in need of vaccination(s).

16
Encourage Parent Participation

• Reach parents through providers
• Emphasize the tangible, personally relevant
  benefits of registries not operational features
  and technical capabilities
• Build credibility by providing a solid foundation
  of privacy and confidentiality

17
Privacy and Confidentiality

• Encourage adoption of minimum specifications and
  guidelines for protecting privacy of registry
  users and the confidentiality of registry data
• Develop criteria for evaluating content and
  implementation of confidentiality policies

18
Registry Financing

• Immunization registries must have adequate and
  sustainable financing
• Immunization registries cannot rely totally on
  federal support
• You should seek and use a range of sources, such
  as Medicaid, private-sector partnerships, and
  state or local funding

19
Plan for the future. . .
20
Increase Registry Relevance

• Programmatic Registry Operations Workgroup
• Designed to provide programmatic standards of
  excellence, including ways to
• Support VFC programs
• Increase vaccine safety
• Implement disease surveillance and prevention
  strategies

21
Registry Certification

• Certification status can facilitate marketing and
  fund raising efforts (e.g., it provides
  reassurance regarding the quality and operation
  of the registry).
• Private providers and other registries should be
  more likely to share data when certified
  registries meet high standards
• NVAC recommends registries be certified.
• Certification is supported by the registry
  stakeholder community as a way of ensuring
  minimum functional standards.

22
Registry Certification, cont.

• All stakeholders feel that certification should
  be voluntary.
• Registry certification awaits
• Evaluate certification pilots
• Finalize certification protocol
• Identify certification contractor

23
Planning Strategically

• Finalizing a 3-5 year strategic plan that will
  address

• Privacy confidentiality
• Technical capabilities
• Integration
• NIP staffing
• Funding

• Partnerships
• Provider participation
• Education
• Data quality
• Data use

Performance measures accountability
24
Some Key Partners

• Stakeholder organizations a few examples
• All Kids Count
• American Immunization Registry Association
• Association of Immunization Managers
• Committee on Immunization Registry Standards and
  Electronic Transactions
• Every Child by Two
• Health care professional organizations
• Public health organizations
• Government public health and financing
  organizations

25
Consider Expanding Your Scope and Skills to
Bio-Terrorism

• Identify ways that registries can assist state
  and local bioterrorism preparedness and readiness
  activities
• Many states are already considering BT uses and
  applications1
• Planning 14 (33) of 42 responding states
• Applied for BT funds 5 (36) of 14
• Received BT funds 2 (40) of 5

1October 2002
26
Reflecting on our efforts to date,

• To paraphrase Ralph Waldo Emerson
• That which we persist in doing becomes easier
  not that the nature of the task has changed, but
  your ability to do has increased.

27
Your Efforts Have. . .

• Helped introduce and apply information technology
  to immunization programs
• Increased our ability to use information
  technology
• Improved our ability to implement immunization
  recommendations and as such, improved the health
  of our children

28
Special Thank You
Thanks to everyone who helped plan and stage this
conference

• Susie Childrey
• Sharon Gentry
• Jameka Gilmore
• Rich Greenaway
• Andrew James

• Suzanne Johnson-DeLeon
• Greg Lanman
• Angela Salazar-Martini

29
Enjoy the Conference!