AAHM Workshop, Negotiating Access to Patient Related Materials: A Conversation between Archivists and Historians, Highlights Researcher Needs
On Saturday, May 10, 2014 members of the Private Practices, Public Health project team hosted a lunch session at the 2014 annual meeting of the American Association for the History of Medicine in Chicago. The session, Negotiating Access to Patient Related Materials: A Conversation between Archivists and Historians, represents efforts by the Medical Heritage Library, Harvard Medical School, and Johns Hopkins University to develop best practices for archivists to speed access to patient-related and patient-generated records that are informed by the working realities of researchers and historians.
Session panelists included Phoebe Evans Letocha, Collections Management Archivist, Alan Mason Chesney Medical Archives at Johns Hopkins, who provided attendees with an overview of HIPAA and what has changed as a result of 2013 revisions to the Privacy Rule; historians Janet Golden, Rutgers University, and Cynthia Connolly, University of Pennsylvania, who shared with the audience their research experiences and difficulties using patient records to inform their research; and Emily R. Novak Gustainis, Head, Collections Services, Center for the History of Medicine, who presented on findings for the survey, Research Access to Protected Records Containing Health Information About Individuals, which sought to elicit information from researchers about what they want from descriptive guides to historical collections containing patient information. The session was moderated by Scott Podolsky, Director of the Center for the History of Medicine and newly elected AAHM Councilor.
Session participants generated a number of points for archivists to consider, including:
- Opening up communications with institutional compliance officers to develop best practices for assessing the “real” risk using patient records for historical research presents to institutions
- Developing better ways to communicate to institutional review boards (IRBs) that historians do not want to distribute research unethically
- Forging a partnership between the American Association for the History of Medicine (AAHM), the Society of American Archivists (SAA), and a professional legal organization to help explain the different access laws to both archivists and researchers state by state and to help advocate for a more consistent researcher experience through more uniform laws
- Crowd-sourcing information on collections with restricted content through researcher participation to help future historians understand whether or not they should pursue an IRB
Feedback from the session will also be incorporated in to Gustainis and Letocha’s presentations at the August 2014 meeting of the Society for American Archivists as part of the session, Partners in Practice: Archivists and Researchers Collaboratively Improving Access to Health Collections.