Members of the Society of American Archivists Science,
Technology & Health Care Roundtable (STHC) and the Archivists
and Librarians in the History of the Health Sciences (ALHHS) have compiled
this web site to provide information on the Health Insurance Portability
and Accountability Act of 1996 (HIPAA) and its impact on historical research
in libraries, archives, or other records repositories. The information provided
here is not intended to be legal advice. Please contact your institution's
legal counsel for clarification on HIPAA and access to records in your repository.
Changes in HIPAA Regulations
On January 25, 2013, the Department of Health and Human Services issued major changes in the HIPAA Privacy Regulations. HHS has issued a press release regarding these changes: http://www.hhs.gov/news/press/2013pres/01/20130117b.html
The final rule is available in full in the Federal Register: http://www.gpo.gov/fdsys/pkg/FR-2013-01-25/pdf/2013-01073.pdf
These changes include a modification to the definition of Protected Health Information whereby "individually identifiable health information of a person who has been deceased for more than 50 years is not protected health information under the Privacy Rule."
Effective date: This final rule is effective on March 26, 2013. Compliance date: Covered entities and business associates must comply with the applicable requirements of this final rule by September 23, 2013.
Archivists with responsibility for records subject to HIPAA are urged to consult with legal counsel regarding the implications of all of the changes. Analysis of these changes will be posted to the HIPAA resource page as it becomes available.
- "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
- Panel 3--Decedent Health Information, Subcommittee on Privacy and Confidentiality,
National Committee on Vital and Health Statistics
- "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
- "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.
- "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, Health Thyself" by Maria Blackburn in Johns Hopkins Magazine vol. 56 no. 5 (November 2004)
"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
- Summary of HIPAA Privacy
- Summary prepared by the Office for Civil Rights on the privacy rule of
HIPAA. Document is in pdf format
Personal Health Information in Research: Understanding the HIPAA Privacy
- Detailed information about the "Privacy Rule," a federal regulation
under HIPAA. Document is in pdf format
- Medical Privacy - National Standards
to Protect the Privacy of Personal Health Information
- Information compiled by the Office for Civil Rights. Includes links to
the full-text of the HIPAA
- HIPAA Privacy Rule: Information
- This web site, compiled by the National Institutes of Health, provides
information on the Privacy Rule for the research community. NIH's Research
Repositories, Databases, and the HIPAA Privacy Rule offers useful information
for archival repositories
- HIPAA Privacy Rule and Public Health
- Guidance from CDC and theDepartment of Health and Human Services
- National Committee on Vital and health Statistics Subcommittee on Privacy and Confidentiality
- Web site of subcommittee that assist the Department of Health and Human
Services on implementation of the health information privacy provisions
Other Resources and Tools for Archivists
- Access to Health Information of Individuals
- Access Policy of the National Library of Medicine adopted after the implimentation of the HIPAA Privacy Rule in April of 2003.The National Library of Medicine is not a covered entity and their policy may be helpful to other repositories who hold personal health information and are not covered entities
- Contextual Integrity and Informed Consent: Providing Web Access to Images of Health and Medicine
- A presentation by Phoebe Evans Letocha at the 2009 annual meeting of the Society of American Archivists
- 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. Authors presented findings from their NHPRC Electronic Records Research Fellowship where they examined examined options for archival reference and research that are HIPAA compliant and illustrated how the Clinical Document Architecture (CDA) and EAD might be incorporated to develop a HIPAA-award finding aid
- Implications of HIPAA for Archives
- Resources maintained by the Alan Mason Chesney Medical Archives of The Johns Hopkins Medical Institutions including their
- reigstration form, terms of access, and privacy forms for HIPAA.
- Are you a Covered
- Charts developed by the Center for Medicare & Medicaid Services to assist you in determining covered entities.
- Information provided by the University of Miami on the Family Education
Rights and Privacy Act (FERPA) and HIPAA
Updated 6 February 2013