Lessons for a Learning Health System: Effectively Communicating to Patients about Research with their Health Information and Specimens
Thursday, September 19, 2024
3:00 PM – 4:00 PM CT
Location: Midway 11 (First Floor)
Abstract: Sharing patient data or biospecimens can improve health and accelerate research. Hospitals can legally share patient data without consent under certain conditions (e.g., if they are de-identified). But patients generally do not understand this and, if they do, report discomfort. Some hospitals argue that setting up a consent process for research use of data would be time-consuming, expensive, and result in less robust research. Many hospitals thus continue it, even knowing it makes some patients uncomfortable. But this does not justify a lack of transparency.
The goal of this mixed methods project with focus group participants (n=33) and survey participants (n=480) was to assess the impact of a new campaign at a major academic medical center to promote transparency regarding how patient data/specimens are used for research. While most survey respondents agreed patients should share data/specimens for minimal-risk research (72%), almost all reported that hospitals should tell patients how they are used (98%). After reviewing a poster or hypothetical news article disclosing how the hospital uses patient data/specimens, respondents reported no change in concerns for privacy, transparency, comfort, respect, or trust. But the vast majority would rather learn this information from the hospital than the news (95%). Our focus group participants expressed largely favorable or ambivalent views after reviewing the same material, and discussed related values - such as altruism and reciprocity - in depth.
This presentation will offer practical recommendations regarding how hospitals can increasingly disclose research use of patient data and specimens without compromising patient trust or research.
Learning Objectives:
After participating in this conference, attendees should be able to:
Upon completion, participants will be able to understand how patients respond to a research transparency campaign at a major academic medical center.
Upon completion, participants will be able to apply lessons from our research to their own disclosure standards.
Kerry Ryan – University of Michigan; Reema Hamasha – University of Michigan; Katherine Hendy – University of Michigan; Camille Giacobone – University of Michigan; J. Denard Thomas – University of Michigan; Melissa Creary – University of Michigan; Jodyn Platt – University of Michigan
