1. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Increasing the Use and Accessibility of Vital Births Data through Regulatory Change Stanley E. Nyberg, PhD Registrar of Vital Records and Statistics Registry of Vital Records and Statistics, HISREB Massachusetts Department of Public Health

2. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Goals of new regulations Broaden range of agencies and individuals allowed access to birth information Increase the format options for releasing data Specify release criteria varying with type of data set from most restrictive to least restrictive

3. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Groups listed in previous regulations Massachusetts DPH employees Child Support Enforcement Researchers approved through specified review process Other jurisdictions through Interjurisdictional Exchange Agreement People specified by statute The data subject

4. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Groups added in new regulations NCHS Officials in other states using the data for public health purposes

5. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Data formats Identifiable confidential birth information Limited data sets (new) De-identified birth information Aggregate birth information (new)

6. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Redisclosure requirements Another jurisdiction may redisclose data for residents of that jurisdiction under following conditions: Public health purpose Minimum information necessary Written agreement Data users may redisclose information from limited data sets with written approval

7. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Types of data sets Identifiable confidential birth information Limited data sets – must exclude identifiers De-Identified Data Sets – must exclude all identifiers and geographic subdivisions smaller than county Aggregate data sets – methods proposed for deidentifying include: Numerator/denominator-based suppression Numerator-based suppression Alternative suppression standards

8. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Major categories of users of confidential birth information In-state governmental agencies and programs Out-of-state governmental agencies and programs National Center for Health Statistics Authorized researchers Reports

9. In-state governmental agencies and programs FIRSTLink WIC DOR Center for Birth Defects Maternal Mortality Surveillance PRAMS Newborn Metabolic Screening Universal Newborn Hearing Screening PELL Approved Research & Data Requests Center for Environmental Health Child Fatality Review National Violent Death Reporting System MassCHIP RVRS & DPH Publications Cancer Registry (and more)

11. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Intra-departmental data use agreements Completed whenever one program requests confidential information from another program The primary custodian is the program that collects and provides the information to the other program Restrictions on content and data use Information may only be used for the specific purposes described in the agreement Information cannot be shared Access limited to individuals listed

12. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Out-of-state governmental agencies and programs Including: Vital records custodians, other agencies, government officials Mostly covered by Interjurisdictional Exchange Agreement Data can be used for other purposes with written agreement

13. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 National Center for Health Statistics Mainly through the Vital Statistics Cooperative Agreement Collaborative research projects

14. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Authorized researchers Researchers must complete an application and submit it to the Research and Data Access Review (RaDAR) Committee Members of the committee include the Registrar, senior staff with experience in epidemiology, public health policy, law or privacy protection for subject Committee makes recommendation to Commissioner

15. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Reports (Example from Deaths 2003, Division of Research and Epidemiology)

16. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Reports, continued Public Document #1 available at RVRS from 1842 to current

17. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Contact information stanley.nyberg@state.ma.us