Resources

HIPAA Resources Introduction

The HIPAA Resources page is a collaborative effort with the Society of American Archivists Science, Technology, and Health Care (STHC) Section.

The information on this page can also be found on this Google spreadsheet.

Would you like to suggest a new resource? Have feedback or questions about an existing resource? Please send us your suggestions or comments using this form!

Bibliography

“Balancing between two goods: Health Insurance Portability and Accountability Act and ethical compliancy considerations for privacy-sensitive materials in health sciences archival and historical special collections.” by Judtih A. Wiener and Anne T. Gilliland in Journal of the Medical Library Association 99(1):15-22 January 2011.

“The Health Insurance Portability and Accountability Act of 1996: Its Implications for History of Medicine Collections” Article by Stephen E. Novak originally published in The Watermark Summer, 2003, Volume XXVI, Number 3: 45-53.

“Access Anxiety: HIPAA and Historical Research” by Susan Lawrence in Journal of the History of Medicine and Allied Sciences, Vol. 62, No. 4. (2007): 422-460.

“Interpreting Privacy: A Survey of the HIPAA Privacy Rule’s Application in Archives and Precedents for Future Directions” by Erik Moore in Archival Elements Summer 2007.

“Enhancing the EAD: Encoded Archival Description of Sensitive Medical Data,” by Catherine Arnott Smith and Nancy McCall.

“What are the HIPAA Photography Rules?” by Steve Alder, 2022.

Examples of Application

Gilliland, A. & Wiener, J. (2011). Digitizing and Providing Access to Privacy-Sensitive Historical Medical Resources: A Legal and Ethical Overview. Journal of Electronic Resources in Medical Libraries, 8(4), 382-403. [Digitization]

Stanford University. [Institutional Websites]

HIPAA Application Forms from the Alan Mason Chesney Medical Archives at Johns Hopkins University. [Institutional Websites]

Access to Health Information of Individuals for the National Library of Medicine, a not-covered entity

Contextual Integrity and Informed Consent: Providing Web Access to Images of Health and Medicine, by Phoebe Evans Letocha at the 2009 annual meeting of the Society of American Archivists. [Images]

“Dead or Alive: HIPAA’s Impact on Nursing Historical Research.” by Brigid Lusk and Susan Sacharski in Nursing History Review, vol. 13 (2005): 189-197.

“HIPAA, Heal Thyself” by Maria Blackburn in Johns Hopkins Magazine vol. 56 no. 5 (November 2004).

Developing the HIPAA-Aware Finding Aid poster produced by Nancy McCall and Catherine Arnott Smith and presented at the 2006 annual meeting of the Society of American Archivists. [Processing and Cataloging]

Are you a Covered Entity? [Charts developed by the Center for Medicare & Medicaid Services to assist you in determining covered entities.]

“The Practice of Privacy” Emily R. Novak Gustainis, Phoebe Evans Letocha.

Sarah E. Almond. “Privacy in the Past: A Study of the Use of Unrestricted Health Information in Digitized Medical Archival Collections.” [Digitization]

Access to Records Containing Confidential Health Information, Columbia University. [Institutional Websites]

“Recommended Practices for Enabling Access to Manuscript and Archival Collections Containing Health Information about Individuals,” Alan Mason Chesney Medical Archives of the Johns Hopkins Medical Institutions and the Center for the History of Medicine at the Francis A. Countway Library of Medicine.

Policy on Access to Personal Medical and Health Information in Collections, University of Pittsburgh. [Institutional Websites]

IRB

University of California San Francisco.

John Hopkins Medicine.

Official Resources

Changes to HIPAA Privacy Regulations by the the Department of Health and Human Services on January 25, 2013. 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 from the Federal Register Vol. 78, No. 17, Friday, January 25, 2013. 138 page PDF, provides complete information on HIPAA and the 50 year rule for descendant research.

Change in the Period of Protection for Decedent Information. Change in the Period of Protection for Decedent Information on pages 5613-5614 of January 25, 2013 Federal Register.

Issue Brief approved by SAA Council in August 2014. Issue Brief approved by SAA Council in August 2014; first issued on the SAA website in August 2014 and announced through a notice in the bi-weekly SAA In the Loop newsletter. The brief was drafted by Phoebe Evans Letocha and Lisa Mix of the STHC Roundtable and submitted to Council by the Committee on Advocacy and Public Policy.

Summary of the HIPAA Privacy Rule. Summary of the HIPAA Privacy Rule from the Office for Civil Rights, last revised in 2003. Document is in pdf format

Protecting Personal Health Information in Research: Understanding the HIPAA Privacy Rule. This booklet from the National Institutes of Health contains information about the “Privacy Rule,” a Federal regulation under the Health Insurance Portability and Accountability Act (HIPAA) of 1996 that protects certain health information.

Full-text of the HIPAA statute. Full-text of the HIPAA statute published on August 20, 1996.

Research Repositories, Databases, and the HIPAA Privacy Rule Research. Repositories, Databases, and the HIPAA Privacy Rule from the National Institutes of Health from January 2004.

HIPAA Privacy Rule and Public Health guidance. HIPAA Privacy Rule and Public Health guidance from CDC and the Department of Health and Human Services from May 2003.

National Committee on Vital and Health Statistics Subcommittee on Privacy, Confidentiality and Security. The Subcommittee on Privacy, Confidentiality and Security monitors major developments with regard to health information privacy, confidentiality and security on behalf of the National Committee on Vital and Health Statistics, and identifies issues and opportunities for investigation. The Subcommittee also makes recommendations to the full Committee and assists the Department in its administration of the privacy and security provisions of the Health Insurance Portability and Accountability Act of 1996 (P.L. 104-191).

Historical background (including LAMPHHS Advocacy)

“Changes to the Privacy Rule of HIPAA” Update for Society of American Archivists presented by Phoebe Evans Letocha at the Privacy and Confidentiality Roundtable (August 14, 2013) and the Science, Technology and Heath Care Roundtable (August 16, 2013).

“Recent Changes to the HIPAA Privacy Rule” by Phoebe Evans Letocha in The Watermark, Spring 2013, Vol. 36 no. 2: 10-19.

“The Impact of the HIPAA Privacy Rule on the Ability to Access and Utilize Archives,” Testimony of Nancy McCall before Panel 3–Decedent Health Information, Subcommittee on Privacy and Confidentiality, National Committee on Vital and Health Statistics.

Testimony of Stephen Novak, for the January 11, 2005 Decedent Health Information, Subcommittee on Privacy and Confidentiality, National Committee on Vital and Health Statistics