Grand Challenges for the Management of Historical Mental Health Records

This post was guest authored by Lorrie Dong, Ph.D. Dong is an independent preservation and archives consultant in Washington State. She completed her Information Studies masters and doctorate at The University of Texas at Austin. Her dissertation and postdoctoral work were focused on the historical mental health records at Central State Hospital in Petersburg, VA.

This post can be read in tandem with her previous post, The Latest on the Dialogues on Mental Health Records Project. 

As a result of our virtual stakeholder meetings with archivists, researchers, and hospital staff, respectively, we have identified four interconnected sectors of concern: Legal, Ethical, Accessility, and Preservation.

While the Health Insurance Portability and Accountability Act (HIPAA) establishes the overarching national regulations for what types and at what point in time health information can be made publicly available, more stringent state laws often take precedence, restricting the release of Individually Identifiable Health Information for longer periods of time or in perpetuity. These laws are also subject to local legislative changes and can vary greatly across states. While access laws may initially appear straightforward, they are often more complicated in practice, such as when an individual’s records contain both Protected Health Information and non-restricted information, or originate from healthcare providers that may or may not be covered by HIPAA.

At some health and archival institutions, the challenge of knowing what historical health information is available, when it can be accessed, and how to access it is exacerbated by a lack of staffing, protocols, and/or resources. As a result, historical records are at times at risk of loss because of potential media obsolescence and improper storage conditions. It is also possible that some covered entities have intentionally created barriers to access, such as prohibitive costs and excessively complicated credentialing, in an effort to protect themselves from accusations of past wrongdoings, reputational damage, and/or calls for monetary reparations.

Tension Between Accessibility and Legality

A tension exists between making mental health records that identify a former patient accessible and protecting medical and archival institutions from possible legal repercussions. Most hospital staff who participated in our forum support allowing access to data that has had all identifying information redacted. However, historical data that includes identifying information is of great use for longitudinal medical research, while datasets without this information are often not useful for researchers engaged in genealogical or case study work.

Based on our forum discussions, we found that the most productive interactions between stakeholders were collaborative relationships that involved open communication and mutual trust. Nevertheless, these substantive relationships between record-holders and record-seekers are rare, at both an institutional and individual level.

Privacy vs. Dignity

For some stakeholders, the protection of patients’ and families’ privacy and the safeguarding of their dignity is one and the same. For others, these needs are at odds with one another. Perspectives vary depending on individuals’ circumstances and beliefs. While some descendants of patients do not want their ancestors’ mental health status revealed for fear of a loss of dignity, others argue that the dignity of those ancestors can only be restored when their names and stories are shared. Who should decide the fate of historical mental health records when parties disagree remains unclear.

The differing self-interests between and among the stakeholder groups form the crux of the grand challenge of managing mental health records. The need for more collaborative, or at least mediated, communication continues so that satisfactory outcomes are agreed on by all parties. While sweeping legal and procedural changes that formalize clear and consistent regulations across the country would be ideal, in reality, highly case-specific negotiations and decisions regarding historical mental health records will most likely remain the most plausible path forward.

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