Access to historic individually identifiable health information: a multi-institutional survey of research institutions
DOI:
https://doi.org/10.5195/jmla.2026.2259Keywords:
Access to Information, Historical Research, Privacy, medical collections, Medical HumanitiesAbstract
Objective: Access to historic individually identifiable health information has been studied from a researcher perspective, but there has not been a comprehensive review of access policies at an institutional level to see if there is any consistency across institutions. The objective of this study is to gather preliminary information on these access policies and potentially identify similarities and gaps to inform future research.
Methods: This study employs an online survey for data collection about respondents’ access policies and procedures at their institution. The final survey instrument consisted of 29 questions with a mix of multiple choice and free-text questions. The survey was distributed through listservs and posted in forums that targeted qualified participants.
Results: The survey received 36 responses, 21 of which met the criteria for inclusion in analysis. Some notable results are that covered entities are nearly equally split on when to open research collections, non-covered entities have a wide range of access policies, and all respondents were nearly equally split on how long it has been since they last updated their access policy.
Conclusion: While the number of responses was low for this study, the results identified areas that would benefit from further research and more robust study methods to potentially achieve a more standardized approach to access policies at research institutions.
References
1. U.S. Department of Health and Human Services. Health Information Privacy. [Internet]. Washington, D.C. [cited 18 June 2025]. https://www.hhs.gov/hipaa/index.html
2. Department of Health and Human Services (US), Office for Civil Rights. Summary of the HIPAA Privacy Rule. [Internet][rev May 2003, cited 3 Sept 2025]. https://www.hhs.gov/sites/default/files/privacysummary.pdf
3. Department of Health and Human Services (US), Office for Civil Rights. Summary of the HIPAA Privacy Rule. [Internet][rev May 2003, cited 3 Sept 2025]. https://www.hhs.gov/sites/default/files/privacysummary.pdf
4. Lawrence, S. Access Anxiety: HIPAA and Historical Research. Journal of the History of Medicine and Allied Sciences. Oct 2007; 62(4): 422-460. https://www.jstor.org/stable/24632368
5. IRB Advisor: Rule Creates Headaches for Historical Medical Archives [Internet]. [rev 1 May 2007, cited 3 Sept 2025]. https://www.clinician.com/articles/103378-rule-creates-headaches-for-historical-medical-archives
6. Department of Health and Human Services (US). Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules. Final rules. Fed Regist. 25 January 2013; 78(17). Available from: https://www.govinfo.gov/content/pkg/FR-2013-01-25/pdf/2013-01073.pdf
7. Evans Letocha, P. Recent Changes to the HIPAA Privacy Rule. The Watermark. 2013 Spring; 36(2): 10-19. http://iis-exhibits.library.ucla.edu/alhhs/Watermark_Vol_36_No_2_Spring_2013.pdf
8. Novak Gustainis E R, Evans Letocha P. The Practice of Privacy. Council on Library and Information Resources; 2015. 21 p. https://www.clir.org/wp-content/uploads/sites/6/ThePracticeofPrivacy.pdf
9. Holden, J, Roeschley, A. Privacy and Access in the Massachusetts Society for the Prevention of Cruelty to Children Records. American Archivist. 1 Mar 2020; 83(1): 77-90. https://doi.org/10.17723/0360-9081-83.1.77
10. Galloway, P. Providing Restricted Access to Mental Health Archives Within Government Archives: The Subject Stakeholder. American Archivist. 24 Jun 2021; 84(1): 165-188. https://doi.org/10.17723/0360-9081-84.1.165
11. Windon, K. Tang, L. Archival Discretion: A Survey on the Theory and Practice of Archival Restrictions. Journal of Contemporary Archival Studies. 2022; 9(11). https://elischolar.library.yale.edu/jcas/vol9/iss1/11
12. Hawk, A. Reference Staffing and Scheduling Models in Archives and Special Collections: A Survey Analysis of Prepandemic Practices. American Archivist. 28 Dec 2022; 85(2):480-510. https://doi.org/10.17723/2327-9702-85.2.480
13. NDSA Storage Survey Working Group. 2023 Storage Infrastructure Survey Report [Internet]. Alexandria, VA: National Digital Stewardship Alliance; 14 Aug 2024. [rev 17 Oct 2024, cited 3 Sept 2025]. https://osf.io/9QP4W
14. Skinner, M. Ioana H. A*CENSUS II All Archivists Survey Report [Internet]. Ithaka S+R; 22 August 2022 [cited 3 Sept 2025]. https://doi.org/10.18665/sr.317224
15. Qualtrics. [Internet]. Qualtrics [cited 2025 June 16] Available from: https://www.qualtrics.com/
16. Groves, R. M., Fowler, F. J. J., Couper, M. P., Lepkowski, J. M., Singer, E., & Tourangeau, R. Survey Methodology. 2nd ed. John Wiley & Sons, Incorporated. 2009. p. 2.
17. Content Analysis. [Internet]. [New York]. Mailman School of Public Health, Columbia University; [cited 2025 June 19]. Available from: https://www.publichealth.columbia.edu/research/population-health-methods/content-analysis
18. Groves, R. M., Fowler, F. J. J., Couper, M. P., Lepkowski, J. M., Singer, E., & Tourangeau, R. Survey Methodology. 2nd ed. John Wiley & Sons, Incorporated. 2009. 201-207p.
19. Novak Gustainis E R, Evans Letocha P. The Practice of Privacy. Council on Library and Information Resources; 2015. 21 p.https://www.clir.org/wp-content/uploads/sites/6/ThePracticeofPrivacy.pdf
20. Dong L, Ilieva P, Medeiros A. Data dreams: planning for the future of historical medical documents. Journal of the Medical Library Association [Internet]. 4 Oct 2018 [cited 23 June 2025]; 106(4). https://doi.org/10.5195/jmla.2018.444
21. Kloss LL, Brodnik MS, Rinehart-Thompson LA. Access and disclosure of personal health information: a challenging privacy landscape in 2016-2018. Yearb Med Inform. 2018 Aug; 27(1):60-66. doi:10.1055/s-0038-1667071.
22. Walch. V. Part 3: A*Census: A Closer Look Expanded Version [Internet]. Society of American Archivists 2006. [cited 17 Sept 2025]. https://www2.archivists.org/sites/all/files/ACensus-Part3%20Closer%20Look%20-%20Expanded.pdf; Skinner, M. Hulbert, I. A*Census II: All Archivists Survey Report. Society of American Archivists. 21 Aug 2022. [cited 17 Sept 2025]. https://sr.ithaka.org/wp-content/uploads/2022/08/SR-Report-ACENSUS-II-All-Archivists-Survey-08222022.pdf
23. Some examples include Windon, K. Tang, L. Archival Discretion: A Survey on the Theory and Practice of Archival Restrictions. Journal of Contemporary Archival Studies. 2022; 9(11). https://elischolar.library.yale.edu/jcas/vol9/iss1/11
Additional Files
Published
Issue
Section
License
Copyright (c) 2026 Amanda Garfunkel
This work is licensed under a Creative Commons Attribution 4.0 International License.
