# Presentation: 411153

## Immunization Registries - Key Strategies for Success

- Robb Linkins, MPH, PhD
- Chief, Systems Development Branch
- National Immunization Program

## Current Situation

- Immunization coverage - record high
- Reported disease - record low
- Effective strategies
- reminder/recall
- assessment/feedback
- linkage with other public health programs

## Why Worry?

- 4 million births/year (11,000/day)
- Mobile population
- Reminder/recall uncommon
- Overestimated coverage
- No disease
- Complex schedule

## Slide 4

## Slide 5

## What are Immunization Registries?

- Confidential, computerized information systems that contain information about immunizations and children

## Some Registry Benefits

- Consolidate records
- Ensure child is up-to-date
- Produce reminders and recalls
- Prevent unnecessary immunizations
- Identify “pockets of need”

## Healthy People 2010 Objective

- Increase to 95% the proportion of children
- (0-<6 years of age) enrolled in a fully functional population-based registry

## Registry Status

- 32/64 grantees developing/implementing
- 22 local communities developing registries
- 22% of US children in registry
- $181.3 million in federal funds since 1994

## Registry Challenges

- Ensure appropriate protections of _privacy/ confidentiality_
- Ensure _participation _of all immunization providers and recipients
- Ensure appropriate _functioning_ of registries
- Ensure sustainable _funding_ for registries

## Registry Challenge

*Ensuring privacy and confidentiality*

## Ensuring Privacy & Confidentiality NIP Activities

- Developed minimum specifications and guidelines
- Facilitating compliance

## Ensuring Privacy & ConfidentialityMinimum Specifications

*Confidentiality policies:  *every registry must have a written confidentiality policy that is actively enforced
*Agreements to protect confidentiality: * all users must sign confidentiality statement
*Notification:  *notice of registry must be given before immunization data are included

## Ensuring Privacy & ConfidentialityMinimum Specifications

*Choice:*  parents must be able to choose whether or not to participate; no penalties for not participating
*Use of immunization registry information:*  registries must identify purpose of data and inform users
*Access to and disclosure of information:*  policies should define who has access and to what data

## Ensuring Privacy & ConfidentialityMinimum Specifications

*Penalties for unauthorized disclosure:*  penalties for unauthorized disclosure should be clearly defined and enforced
*Data retention and disposal:*  policies must address how long data will be retained

## Registry Legislation StatusRegistry Authorization

- 22 states specifically authorize registries
*12/22 mandate reporting* - Arizona, Arkansas, Connecticut, Delaware, Georgia, Maine, Michigan, Mississippi, Tennessee, Texas, Vermont, West Virginia

## Registry Legislation StatusConsent

*14 states require explicit consent* (“opt in”)
- California, Hawaii, Idaho, Illinois, Indiana, Kansas, Louisiana, Massachusetts, New Jersey, New York, North Dakota, Texas, Utah, Virginia
*33 states have implied consent* (“opt out”)
*19/33 states have provisions to opt out or limit access*
*9/33 states have no such provisions* - Alabama, Arkansas, Delaware, D.C., Mississippi, Missouri, North Carolina, South Carolina, West Virginia

## Registry Legislation StatusNotice

*34 states provide or are planning to provide notice*
*11 states do not provide notice* - Alabama, Arkansas, Delaware, D.C., Florida, Mississippi, Missouri, Nevada, Oklahoma, South Carolina, West Virginia

## Registry Challenge

*Ensuring provider/recipient participation*

## Ensuring ParticipationNIP Activities

- Work with professional and parent organizations
- Demonstrate the usefulness of registries

## Ensuring ParticipationEndorsements Received

- Aetna/US Healthcare
- Am Academy of Pediatrics
- Am Ass of Health Plans
- Am Osteopathic Ass
- Am Public Health Ass
- Am School Health Ass
- Ass of State & Territorial Health Officers

- Informed Parents Against Vaccine Associated Paralytic Polio
- Nat Ass of County & City Health Officers
- Nat Ass of Pediatric Nurse Associates & Practitioners
- Nat Ass of School Nurses
- Nat School Boards Ass
- US Dept of Education

## Ensuring ParticipationData Usefulness

- Rhode Island
- 60% increase in lead screening after integrated registry was used to identify at-risk children
- Arkansas
- identified children who received wrong dosage and/or expired vaccine

## Ensuring ParticipationData Usefulness

- California (Kaiser)
- identified and re-vaccinated 4 rather than 15,000 children who received sub-potent vaccine
- Oklahoma
- monitored the implementation of IPV; data helped facilitate all IPV recommendation

## Ensuring ParticipationData Usefulness

- Minnesota (HealthPartners)
- Children:
- coverage increase from 61% to 88%
- Adults:
- coverage increased from ~30% to 82% (influenza) and 85% (pneumococcal)
- flu cost-savings:  1:4 in direct costs

## Registry Challenge

*Ensuring appropriate functioning*

## Ensuring Appropriate FunctioningNIP Activities

- Identified core data elements and functional standards

## Ensuring Appropriate FunctioningCore Data Elements

- Patient name
- Patient birth date
- Patient sex
- Patient birth state/country
- Mother’s name

- Vaccine type
- Vaccine manufacturer
- Vaccination date
- Vaccine lot number

## Ensuring Appropriate FunctioningFunctional Standards

- Store core data elements
- Establish record within 2 months of birth
- Enable data retrieval at encounter
- Ensure data submission <1 month of administration
- Protect confidentiality
- Recover lost data

## Ensuring Appropriate FunctioningFunctional Standards

- Use HL7
- Provide decision support
- Enable reminder/recall
- Produce coverage reports
- Produce authorized records
- Optimize accuracy and completeness

## Ensuring Appropriate FunctioningNIP Activities

- Identify standardized evaluation criteria for each functional standard
- Monitor progress in achieving functional standards through annual site visits
- Consider using functional standards as basis for “certification”

## Registry Challenge

*Ensuring sustainable funding*

## Ensuring Sustainable FundingNIP Activities

- Assessed registry costs
- Identified alternate funding sources

## Ensuring Sustainable FundingRegistry costs

- ~$5/child/year
- ~$125 million/year to develop and operate registries
- 40% of registry funds are federal

## Ensuring Sustainable FundingAlternate Funding Sources

- Medicaid agencies can receive up to 90% financing to develop registries
- Maine (90%)
- Oregon (50%)