1. Birth and Death Data Release and Re-release Laws, Regulations, Policies and Procedures: State Survey Results 8 June, 2004 NAPHSIS – Portland, OR Mark Flotow, Illinois NAPHSIS Statistics Committee

2. NAPHSIS Statistics Committee Survey Results Survey Background - the VSCP contract is due for renewal 1 July, 2004 - provide guidance to the NAPHSIS VSCP Committee regarding content of the new contract - NAPHSIS Statistics Committee wanted to gather information regarding jurisdictions’ data release practices and to compare those to NCHS’s

3. NAPHSIS Statistics Committee Survey Results Survey Basics - survey conducted via e-mail in April 2004 - survey sent to each VSCP project director - survey consisted of nine questions regarding the release and re-release of birth and death data, with particular attention to laws, regulations, policies and procedures - the following survey results represent 39 responses

4. NAPHSIS Statistics Committee Survey Results Individual Question Results 1. Laws, regulations, policies and procedures that address the release of individual-level data Birth Data Death Data ● laws or regulations97%92% ● policies or procedures90%87% ● laws, regulations, policies or procedures 100%97%

5. NAPHSIS Statistics Committee Survey Results Individual Question Results 2. Laws, regulations, policies and procedures that address the release of individual-level data to other governmental units Birth Data Death Data ● laws or regulations/state gov.82%82% ● policies or procedures/state gov.80%80% ● laws or regulations/federal gov.82%80% ● policies or procedures/federal gov.77%77%

6. NAPHSIS Statistics Committee Survey Results Individual Question Results 3. Individual-level data files for public use or release Birth Data Death Data ● public use data sets15%20%

7. NAPHSIS Statistics Committee Survey Results Individual Question Results 4. Laws, regulations, policies and procedures that address the re- release of individual-level data Birth Data Death Data ● laws or regulations62%56% ● policies or procedures85%80%

8. NAPHSIS Statistics Committee Survey Results Individual Question Results 5. List of variables NCHS releases in their public use data files – could these data be released in their jurisdiction? Birth Data Death Data ● could release without review 5% 8% ● need approval from gate-keepers64%72% ● laws, regulations, policies or procedures prohibit release31%20%

9. NAPHSIS Statistics Committee Survey Results NCHS Public-Use Data File NCHS Public-Use Data File includes all the variables sent to NCHS by the jurisdictions, except: - certificate number - day of event - date of birth of mother/father/decedent - county/city codes for those with < 100,000 population

10. NAPHSIS Statistics Committee Survey Results Individual Question Results 6. List of variables jurisdictions provide to NCHS – could the data from these variables be released by their jurisdiction to another federal agency? Birth Data Death Data ● could release without review 3% 8% ● need approval from gate-keepers92%89% ● laws, regulations, policies or procedures prohibit release 5% 3%

11. NAPHSIS Statistics Committee Survey Results Individual Question Results 7. List of variables jurisdictions provide to NCHS – could the data from these variables be released by their jurisdiction to researchers? Birth Data Death Data ● could release without review 0% 5% ● need approval from gate-keepers92%90% ● laws, regulations, policies or procedures prohibit release 8% 5%

12. NAPHSIS Statistics Committee Survey Results Individual Question Results 8. & 9. What modifications could be made to a data request or data file that would permit release by a jurisdiction that had laws, regulations, policies or procedures that restricted data release? Birth Data Death Data ● no modifications could be made that would allow release 8% 3% ● ask for specific variables, not entire data set63%58% ● collapse or aggregate certain data66%58% ● multiple years of data or remove year of the event from file53%47%

13. NAPHSIS Statistics Committee Survey Results Individual Question Results 8. & 9. What modifications could be made to a data request or data file that would permit release by a jurisdiction that had laws, regulations, policies or procedures that restricted data release? Birth Data Death Data ● reduce geography specificity63%55% ● remove values that most easily identify individuals55%47% ● introduce “noise” for certain variables24%18%

14. NAPHSIS Statistics Committee Survey Results Survey Implications - survey results show that both the jurisdictions and NCHS should be concerned, vis-à-vis the VSCP contract, with inconsistencies on how birth and death data are released or re-released - there are perhaps three areas where our mutual efforts should be focused: 1) public use files 2) data release to other government entities 3) data release to researchers

15. NAPHSIS Statistics Committee Survey Results Survey Implications – Public Use Files - few jurisdictions offer individual-level birth or death data files for public release - few jurisdictions could release individual-level data as currently or exactly specified in the NCHS public use data files - however, most jurisdictions could release birth and death data in the NCHS public use files with some modifications or with approval from their vital event gate-keeper(s)

16. NAPHSIS Statistics Committee Survey Results Survey Implications – Data Release to Other Government Entities - few jurisdictions could release individual-level data directly to other federal agencies for all the variables they currently send to NCHS - however, many of the jurisdictions could release birth and death data to other federal agencies with some modifications or with approval from their vital event gate-keeper(s)

17. NAPHSIS Statistics Committee Survey Results Survey Implications – Data Release to Researchers - virtually all jurisdictions require review and approval before birth and death data could be released for research purposes - NCHS’s Research Data Center and its guidelines for use by researchers could address many jurisdictions’ concerns regarding safeguarding confidentiality and other state laws, regulations, policies and procedures for birth and death data

18. NAPHSIS Statistics Committee Survey Results Survey Conclusions - survey results suggest inconsistencies between the laws, regulations, policies and procedures concerning release of birth and death data in the individual jurisdictions and the potential re-release of those data by NCHS - such inconsistencies potentially encourage data users to try both the individual jurisdictions and NCHS to “fish” for additional data specificity or detail - this survey represents the first step in addressing this issue: acknowledging there is one

19. NAPHSIS Statistics Committee Members Jay Buechner, Rhode Island Bruce Cohen, Massachusetts Mark Flotow, Illinois Isabelle Horon, Maryland – Chair Garland Land, Missouri John Oswald, Minnesota