Patient privacy, transparency, and disclosure: Exploring the disclosure of hospital data sharing practices to diverse patient populations
Saturday, September 21, 2024
8:45 AM – 9:45 AM CT
Location: Midway 5 (First Floor)
Abstract: Most patients are uncomfortable with hospitals selling or sharing their health data with companies. Patients want to be asked for consent, or at least given notice. Patients report worry that profit-driven users might burden or exploit them. Yet little is known regarding data sharing practices at major academic medical centers (AMCs) across the United States, how they promote privacy and transparency with patients, or even how they set standards for disclosure and consent.
In this qualitative project, involving interviews with AMC stakeholders (n=35), we assessed how they disclose their data sharing practices to patients. We also explored the institution's perceived risks and benefits around disclosure to patients (e.g., if a patient would seek care elsewhere or not tell pertinent health information to their clinician). We assessed which of their current policies or practices hospitals might be willing to compromise on, if associated with undesired patient impact.
We found that, because of the massive increase in requests to share data with industry, many hospitals have developed specialized data sharing committees to review these requests. Values committees weigh include patient privacy, supporting research, and institutional reputation. While many mentioned ensuring the right kind of consent form had been “signed,” few discussed more extensive engagement with patient communities to ensure transparency – or that signed forms translated to increased knowledge.
This talk will discuss this under-explored area of how hospitals promote privacy and transparency for sharing patient data with industry, as well as their ethical considerations, to inform best practices moving forward.
Learning Objectives:
After participating in this conference, attendees should be able to:
Upon completion, participants will be able to understand how major academic medical centers disclose research use of data and specimens to patients.
Upon completion, participants will be able to evaluate the tensions hospitals perceive between disclosure of research use of patient data and specimens and the hospital's best interest.
J. Denard Thomas – University of Michigan; Kathrine Hendy – University of Michigan; Kerry Ryan – University of Michigan; Melissa Creary – University of Michigan; Alexandra Vinson – University of Michigan; Camille Giacobone – University of Michigan; skyler Pearce – University of Michigan; Jodyn Platt – University of Michigan
