1. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Refining the NAPHSIS role in data access Bruce Cohen Sukhjeet Ahuja June 7, 2010

2. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Goals Protect confidentiality of jurisdictional vitals data: o Adhering to state regulations o Following review procedures o Incorporating data release policies while Promoting use of vitals data for research to the greatest extent possible

3. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Context o Jurisdictions have increased responsibilities regarding data access o Our Federal partners have increasing demands for use of data for research o Strengthening NAPHSIS involvement can help represent state interests while expediting appropriate access and use

4. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Challenges o Jurisdictions have differing policies and procedures o Researchers doing more complex analyses o Federal agencies expanding use of data o Web-based query systems o Multiple projects and ongoing use o Desire to be data providers as well to be data users

5. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Successes o NAPHSIS-NCHS review process o PRAMS o EPHTN o NCI o NDI-CMS

6. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS-NCHS Review Overview Grew out of discussions at last year’s annual meeting to involve states more in the process while maintaining timeliness o NCHS triages data requests to NAPHSIS review committee o NAPHSIS uses online application and an online review form to expedite process

7. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS-NCHS Review Overview o Communicate with applicant to address any issues o Send final approval to NCHS. If disapproved, send applicant a thorough explanation.

8. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS Review Committee o Cathy Molchan Donald (AL) o Glenn Copeland (MI) o Isabelle Horon (MD) o Lou Saadi (KS) o Mark Flotow (IL) o Patricia Potrzebowski (PA) o Stanley Cooper (NE) o Derek Pate (OK) o Bruce Cohen (MA) o Sukhjeet Ahuja, NAPHSIS

9. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Review Criteria 1. Confidentiality and data security: Researcher needs to agree to neither identify nor try to identify any individual contained in the data; not to publish information that could potentially identify any individual; use data only for approved projects; adhere to NCHS data release standards; securely store data to maintain their confidentiality; and appropriately dispose of data to ensure confidentiality when project is completed. 2. Feasibility: Data requested can be used to reasonably address the research goals described in the application and are not already publicly-available through NCHS’s Vital Stats Website. Researcher has demonstrated ability to perform data analysis pursuant to the research goals described in project proposal.are not already publicly-available through NCHS’s Vital Stats Website

10. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Review Criteria 3. Scientific merit: Proposed project constitutes legitimate research that may lead to improvement of health. Legitimate research for the purposes of this section shall mean a systematic statistical study, conforming to or in accordance with generally accepted scientific standards or principles, designed to develop or contribute to scientific knowledge, and that does not identify any person in the study.

11. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Review Outcomes Approved projects: are forwarded to NCHS for their review. NCHS will obtain signed Data Use Agreements and provide the appropriate data.

12. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Review Outcomes Denied projects: are forwarded to NCHS for their consideration as projects appropriate for analysis through their Research Data Center. Applicants will also be directed to specific jurisdictions to obtain data directly, if applicable. Applicants will be informed of the specific reason(s) for denial of request.

13. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Review Results o 76 reviews completed since last year (as of 06/03/10) o Median time to get initial feedback to researcher:14 calendar days o Median time for approval:14.5 calendar days o 55 approved, 2 disapproved, 19 currently under review (awaiting reviews and researcher’s response)

14. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Distribution of Research Requests o Academics (Universities and Graduate students) – 33 requests o Non-CDC Federal Agencies (e.g. HHS, NIOSH, NHTSA, NCI, NIH, and EPHTN etc,.) – 17 requests o CDC – 14 requests o Research Entities (Private and Non- governmental Agencies) – 8 requests o Individual Researchers (e.g. Journalists, Foreign Researchers etc,.) – 4 requests

15. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Distribution of Research Requests

16. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Emerging Issues o How can we evaluate research credentials? o Can we approve ongoing research activities rather than individual uses? o Can we permit commercial use? o Can we allow re-release of data? o How do we evaluate data going into web- based query systems? o Are there other files that can be created easily by NCHS that might be useful?

17. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and PRAMS: Issues o Some state vitals registries have not been as involved as they need to in the CDC PRAMS data release process o CDC PRAMS was providing data to researchers that may have been inconsistent with state-specific review and release policies

18. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and PRAMS: Resolution o Clarification of CDC PRAMS file use o Creation of research file negotiated by states with CDC PRAMS that requires signed data use agreement but no further review o State registries review other research requests o Hopefully, fostered more collaboration between state PRAMS programs and state registries

19. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and EPHTN: Issues o Uncertainty about how EPHTN was using vital statistics data at national and state levels o Concerns about release of vitals data National Public Portal o Lack of clarity about process for using National Secure Portal o Complex data request to obtain vitals data from NCHS

20. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and EPHTN: Resolution o NAPHSIS reviewed public portal data release standards o NAPHSIS facilitated the transfer of data from NCHS to EPHTN o Use of national secure portal by individual researchers will require NAPHSIS review

21. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and NCI: Issues o Re-release of county level data through NCI’s Seer*Stat web based query system may not be consistent with agreed upon suppression standards o Multiple, ongoing uses of data by NCI research group substantially different from explicit, specific data research project request

22. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and NCI: Resolution o Seer*Stat is changing release criteria to suppress small numbers at the county level o NAPHSIS review team accepted the unique NCI ongoing group data use

23. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and NDI CMS Request: Issue o CMS wished to not only use approved data, but also to provide the data to external researchers after a formal review process

24. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 NAPHSIS and NDI CMS: Resolution o Use of CMS analytic file by external researchers will be reviewed by the NDI advisors which include state representatives

25. Gateway to the Future: Improving the National Vital Statistics System St. Louis, MO June 6 th – June 10 th, 2010 Final thoughts o Both NAPHSIS and NCHS are committed to protecting the confidentiality of the data and promoting research use o State involvement in review of national data requests has strengthened the process while upholding jurisdictional responsibilities o Hopefully, these processes have enhanced understanding among jurisdictions, researchers, and our Federal partners that will led to more collaboration