NVAC Progress Report on Immunization Information Systems Alan R. Hinman, MD, MPH NVAC Immunization Coverage Sub-committee February 5, 2007

1997 NVAC Registry Initiative Charged with identifying barriers to developing and implementing immunization registries Defining milestones for development and implementation of a comprehensive plan for implementation of universal state- based and community-based immunization registries

1997 NVAC Registry Initiative 4 public meetings attended by >400 persons Testimony from 104 persons 20 focus group interviews by CDC “Development of Community- and State- Based Immunization Registries” approved by NVAC January 1999

Healthy People 2010 goal Increase to 95% to proportion of children <6 years of age who participate in fully operational population-based immunization registries

IIS goals 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

2000 NVAC IIS progress report Developed late 2000 Approved January 2001

Recommendations 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.

Recommendations 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.

Recommendations 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.

Recommendations 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)

Recommendations d.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. e.Continue to update and expand studies of costs and benefits of registries

Participation in IIS – 2000 & Children <6 21% 56% Public provider sites 38% 75% Private provider sites 19% 44%

No Report 0-33% 34-66% 67-94% % Source: CY 2005 IISAR National Average: 56% Percentage of U.S. Children aged < 6 years Participating in Immunization Information Systems – December 31, 2005 Chicago (34%-66%) Houston (34%-66%) New York City (95%–100%) Philadelphia (95%–100%) San Antonio (67%–94%) Washington DC (67%–94%)

 95% Participation = 11 Grantees (20%)  80% Participation = 22 Grantees (39%)  60% Participation = 36 Grantees (64%) Challenges = 7 Grantees National Average: 56% Source: CY 2005 IISAR Immunization Information Systems – December 31, 2005 Participation Progress for U.S. Children aged < 6 years

Percentage of U.S. Public Provider Sites Participating in an Immunization Information System – December 31, 2005 Source: CY 2005 IISAR National Average: 75% Chicago (34%-66%) Houston (67%–94%) New York City (95%–100%) Philadelphia (95%–100%) San Antonio (95%–100%) Washington DC (67%–94%) No Report 0-33% 34-66% 67-94% %

Percentage of U.S. Private Provider Sites Participating in an Immunization Information System – December 31, 2005 Source: CY 2005 IISAR National Average: 44% No Report 0-33% 34-66% 67-94% % Chicago (0%-33%) Houston (34%–66%) New York City (67%–94%) Philadelphia (95%–100%) San Antonio (95%–100%) Washington DC (95%–100%)

IIS State Legislation (including Washington DC): Authorizes an IIS: 27 states (53%) Mandates reporting: 14 states (27%) Requires participation (Opt-Out): 44 states and Washington D.C. (86%) Immunization Information Systems State Legislation Source: Survey of State Registry Legislation (updated )

IIS Capacity to Track Adolescent and Adult Vaccinations Provisional data from the 2005 Immunization Information System Annual Report indicate that: About 21% (12 of 56 grantees) report that they include birth to < 23 years of age in their IIS. About 63% (35 of 56 grantees) report that they include all ages in their IISs.

4 million births/year (11,000/day) Population mobility Extra-immunization Resources for immunization activities are diminishing Few providers use reminder/recall Immunization Information Systems Why they are still needed

Parents and providers over-estimate coverage New vaccines keep being added Public health emergencies As a source of experience for the development of Electronic Medical Records Immunization Information Systems Why they are still needed

Immunization Information Systems Why they are Needed – Public Health Emergencies Hurricane Katrina disrupted and displaced > 200,000 people who lost everything including immunization records; Healthcare providers for the displaced children found > 56,000 immunization histories on LINKS saving millions of dollars in revaccination costs.

Immunization Information Systems Why they are Needed – Public Health Emergencies In a recent CDC IIS Pandemic Flu survey implemented by AIRA, 71% of responding grantees stated that they have the regulatory authority or legal authority to collect vaccine doses for all ages; and 83% of the respondents indicated that they would use their IIS for the collection of vaccine doses for pandemic flu.

Newer uses of IIS IIS and adolescent/adult immunization IIS and preparedness IIS and vaccine shortages IIS and interoperability with other health information systems/health information exchanges (HIE)

NVAC 2007 IIS Progress Report process Immunization Coverage Sub-Committee given task in summer 2006 Draft progress report developed in conjunction with NVPO, NCIRD, AIRA Circulated and revised based on Sub- Committee comments Draft presented to NVAC September 2006 Revisions circulated to Sub-Committee October and December 2006 Approval draft circulated to NVAC January 2007

Recommendations - 1 Ensure appropriate protections of privacy and confidentiality for individuals and security for information included in the registry –Continue to ensure that IIS comply with HIPAA and other applicable laws/regulations governing privacy, confidentiality, and security, e.g., PHIN standards

Recommendations - 2 –DHHS should work with DOE to ensure that FERPA does not impede the sharing of 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

Recommendations - 3 Ensure participation of all immunization providers and recipients –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

Recommendations - 4 –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 have access to their IIS immunization information

Recommendations - 5 Ensure appropriate functioning of registries –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

Recommendations - 6 –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

Recommendations - 7 –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

Recommendations - 8 –Collaborate with ONCHIT to ensure IIS reporting standards are incorporated into Electronic Medical Records that receive federal funds or that are certified by ONCHIT

Recommendations - 9 Ensure sustainable funding for registries –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/persons covered)

Recommendations - 10 –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) Continue to update and expand studies of costs and benefits of IIS

Comments from NVAC members - 1 p25 – recommendation 2.6 – NVPO should convene a meeting to deliberate the pros and cons of mandating provider participation in an IIS - federal funds should not support this activity –NVAC discussion

Comments from NVAC members - 2 p25 - Clarify recommendation 3.1 –Recommendation 3.1 – NCIRD should further develop IIS certification protocols as program needs or technology evolves and resources should be made available to sponsor, support, and conduct IIS certification.

Comments from NVAC members - 3 pp Recommendation 3.3 – making patient contact information mandatory –NVAC discussion

Comments from NVAC members - 4 p28 - Federal legislation to allow states to share immunization data –Action step 3.14 – DHHS should consider proposing legislation that would allow states (and territories) to share immunization and birth data without having to enter into individual Memorandums of Agreement with other states

Comments from NVAC members - 5 p30 - Need for resources for NCIRD to do all these things –Action step 4.5 – Congress should assure that CDC has adequate funds and staff to continue to provide leadership and technical support