Immunization Information Systems NVAC Progress Report Alan R. Hinman, MD, MPH NVAC Subcommittee on Immunization Coverage September 26, 2006

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%

Percentage of children <6 participating in IIS December 31, 2005

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

MCIR Activity  3.8 million records  Over 50 million immunizations are stored in MCIR  7,500 user log-ins to MCIR every day

Gogebic Otonagon Houghton Keweenaw Iron Baraga Marquette Dickinson Alger Delta Menominee Schoolcraft Luce Mackinac Chippewa Cheboygan Presque Isle Charlevoix Antrim Otsego Leelanau Benzie Grand Traverse Kalkaska Crawford OscodaAlcona ManisteeWexfordOgemawIosco MasonLakeOsceola Clare Gladwin Arenac OceanaNewaygoMecostaIsabella Midland Bay Huron Muskegon Montcalm GratiotSaginaw Tuscola Sanilac St. Clair Lapeer ShiawasseeClintonIonia Kent Ottawa AlleganBarryEatonIngham LivingstonOakland Macomb Van Buren KalamazooCalhounJacksonWashtenawWayne Berrien CassHillsdale Lenawee Monroe St. JosephBranch Missaukee Alpena Roscommon Emmet Genesee Montmorency January :3:1:3:3:0 Detroit % % % % % % % Current Immunization Profile for Month Old Children Based on MCIR Data Gogebic Otonagon Houghton Keweenaw Iron Baraga Marquette Dickinson Alger Delta Menominee Schoolcraft Luce Mackinac Chippewa Cheboygan Presque Isle Charlevoix Antrim Otsego Leelanau Benzie Grand Traverse Kalkaska Crawford OscodaAlcona ManisteeWexford Ogemaw Iosco MasonLake Osceola Clare Gladwin Arenac Oceana NewaygoMecostaIsabellaMidland Bay Huron Muskegon MontcalmGratiotSaginaw TuscolaSanilac St. Clair Lapeer ShiawasseeClintonIonia Kent Ottawa AlleganBarryEatonInghamLivingstonOakland Macomb Van Buren Kalamazoo CalhounJacksonWashtenawWayne Berrien CassHillsdale Lenawee Monroe St. JosephBranch Missaukee Alpena Roscommon Emmet Genesee Montmorency 4:3:1:3:3:1 Detroit August 2006

MCIR Immunization Levels for 4:3:1:3:3:1

Health Plan Incentives $ up to date 2 year old $ up to date 2 year old $30.00 for up to date Medicaid 2 yr. Old $ for up to date 11 to 13 yr old Enter historical data for providers Must participate in MCIR to become a participating provider

Lead Data Results Added a lead pop-up window –Medicaid enrolled –Mapped to HR zip code 23% increase March – May of 2004 in lead testing as compared to 2003 data. Increased provider participation

Schools and Daycares 5620 Schools 92% enrolled in MCIR 5542 Daycares 81% enrolled in MCIR

All Assessment activities done solely through Registry –Child-care facilities (comprehensive) –Head Start facilities (comprehensive) –Public, Charter, Parochial, Private Schools (comprehensive) –Specific populations Registry Algorithm determines compliance with childcare and school immunization requirements –Includes varicella disease history –Includes medical and religious exemptions to Antigens DC Registry & Assessment

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)

Proposed NVAC 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. HHS 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.

Proposed NVAC recommendations 2. Ensure participation of all immunization providers and recipients. Continue recruiting immunization providers by demonstrating the utility of IIS and minimizing any administrative burden participation may place on providers. Pursue partnership opportunities with professional organizations and other key stakeholder groups.

Proposed NVAC recommendations 3. 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.

Proposed NVAC recommendations Promote the expansion and utility of IIS by: –i ncluding persons of all ages –changing the following data variables from optional to required status: patient contact information, including address, zip code and phone number patient race/ethnicity patient birth order

Proposed NVAC recommendations –adding new optional data variables: historical vaccination flag indicator VFC eligibility history of varicella disease indicator patient status indicators, including active, inactive, MOGE, and other classifications.

Proposed NVAC recommendations Promote the continued development and 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. Promote the central role of IIS in response to pandemic influenza or other public health emergencies.

Proposed NVAC recommendations 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 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).

Proposed NVAC recommendations 4. Ensure sustaining 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 (i.e., $5/year/child 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).

Proposed NVAC recommendations –Continue to update and expand studies of costs and benefits of IIS.