This is a quick guide to academic and popular writing related to patient access to mental health records.
Howard Dully and Charles Fleming, My Lobotomy (New York: Three Rivers Press, 2008).
- Memoir by Howard Dully, a man from San Jose, California who was 12 when he was subjected to an "icepick" lobotomy by the notorious Dr. Walter Freeman. As an adult, he set out to learn more about what had happened. National Public Radio researchers helped him access his records among Freeman's papers in the George Washington University archives.
- Dully is also featured in a 2005 story on NPR's All Things Considered: "'My Lobotomy': Howard Dully's Journey" (audio and transcript).
Dorothy Dundas, "Behind Locked Doors: How I Got My Hospital Records, and What I Did With Them", Mad In America, May 13, 2014.
- Essay by psychiatric survivor, activist, and artist Dorothy Dundas. Dundas was institutionalized in the 1960s and eventually received copies of her hospital records through persistent advocacy. She describes the experience of getting her records, and how she eventually repurposed them to create and publish her collage poster, "Behind Locked Doors."
Note: Some publications are fully available online (marked as "open access.") Others are behind a paywall. This means the full text may be difficult to access if you aren't associated with an academic institution. For assistance, contact firstname.lastname@example.org.
Noah Geraci, "Patient Experiences of Access to Mental Health Records" (University of California Los Angeles, 2016) (open access).
- This is the master's thesis of this site's founder, written under the guidance of Dr. Anne Gilliland in the UCLA Department of Information Studies. It aims to document why people access their own records and what their experiences are like, both logistically and emotionally. It's based on a small study consisting of 5 in-depth interviews conducted in California with people who have accessed their own records, and draws from frameworks in critical archival studies, disability studies, and feminist epistemologies.
Michael W. Kahn, Sigall K. Bell, Jan Walker, and Tom Delbanco, "Let’s show patients their mental health records," JAMA 311, no. 13 (2014): 1291-1292. (summary at the link, full text behind paywall).
- Opinion piece from the Journal of the American Medical Association by doctors and researchers involved in the OpenNotes project, advocating for including mental health records in records access initiatives, and dispelling fears from the medical community around making mental health records more open.
Jacqueline Z. Wilson and Frank Golding, "Latent Scrutiny: Personal Archives as Perpetual Mementos of the Official Gaze," Archival Science 16, no. 1 (2015): 93–109, doi:10.1007/s10502-015-9255-3. (abstract at the link, full text behind paywall).
- Wilson and Golding are Australian researchers who both experienced out-of-home care as children (similar, though not identical, to foster care systems in the U.S.). This insightful article, published in a major archives journal, explores the significance of records for people with such experiences, including the emotional significance of accessing these records as adults and the many inaccuracies and oppressive power dynamics in such records. They also emphasize the importance of "insider researchers" applying personal experience to this kind of research.