F3. Roundtable HIPAA, Privacy and Accessing Historical Medical Records Chair: Alexandra Lord, National Museum of American History Susan Lawrence, University of Tennessee, Knoxville
Elizabeth Stauber, University of Texas at Austin
Jamie Bronstein, New Mexico State University
Jon Crispin, Independent Community Historian
Sarah Handley-Cousins, University of at Buffalo
Ryan Thibodeau, St. John Fisher University
In 1996, HIPAA created national standards to protect a patient’s health information from being disclosed without the patient’s consent or knowledge. As it was originally written, HIPAA also effectively prevented historians and descendants from ever accessing medical records if they were stored in entities covered by the law. By 2013, the US Department of Health and Human Services (HHS) had recognized the problem caused by “the lack of access to ancient or old records of historical value.” That year, HHS published 45 CFR 164.502(f), a rule amending HIPAA and allowing patient records to be accessed 50 years after the patient’s death.
While some states opened their medical archives, laws banning or sharply limiting access to these records are still widespread. New York State, for example, requires historians seeking access to nineteenth-century asylum records to submit to an IRB. Michigan recommends that researchers hire an attorney and obtain a court order. But the situation is even worse in states such as Massachusetts where historians and descendants are barred from accessing these records.
To some degree, these restrictions are understandable. After all, medical records include sensitive private information. But banning or, more simply, imposing requirements which make these records inaccessible puts them at risk of destruction. It also prevents scholars from using them to develop a nuanced and deep understanding of the experiences of patients in the past.
In 2016, an AAHM panel explored the potential destruction of these records along with issues around Privacy Boards and researchers’ access. Building on that conversation, this proposed roundtable will focus on both changes over the last nine years as well as the impact of state laws on care of and access to these records. Bringing together key stakeholders, including archivists, community historians, academic historians and public historians, this roundtable will also explore the ways in which historians, archivists, and practitioners can work together to develop best practices for safeguarding records while providing scholars and others with access.
This roundtable will encourage the following Learning Objectives:
* Develop knowledge and understanding of professional behaviors and values:
* Understand the dynamic history of medical ideas and practices, their implications for patients and health care providers, and the need for lifelong learning by promoting an understanding of how concepts of patient privacy have shifted over time
* Promote tolerance for ambiguity of theories, the nature of evidence, and the evaluation of appropriate patient care, research, and education by promoting an understanding of how concepts of patient privacy have shifted over time
Contribute to the improvement of patient care
* Acquire a historically nuanced understanding of the organization of the U.S. healthcare system, and of other national health care systems by promoting an understanding of both the ways in which concepts of patient privacy have shifted over time and the need to ensure that patient records are maintained for future study by historians and practitioners
* Respond to changes in medical practice guided by a historically informed concept of professional responsibility and patient advocacy by promoting an understanding of how concepts of patient privacy have shifted over time
