https://orcid.org/0000-0002-2862-7601
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Abstract
With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: (1) Address the role of history and experience on trust, (2) engage concerns about potential group harm, (3) address cultural values and communication barriers, and (4) integrate patient values and expectations into oversight and governance structures.
ACKNOWLEDGMENTS
The authors thank Elidia Contreras, Yasmin Hernandez, Lu Wah Hung, and Lily Liang of the Palo Alto Medical Foundation Research Institute for their invaluable assistance in recruitment, video translation, focus-group moderation, and project management; Gary Ashwal and Alex Thomas of Booster Shot Media for the creative development of the library metaphor and our trigger videos; and David Magnus of Stanford University for his role as a key member of the study team. ▪
Notes
1. For example, we attempted to address a common misconception that doctors were using the library directly to guide patient care by creating a series of images showing temporal and physical separation between the collection of samples and data, research on samples and data, and doctors learning about research findings. We also changed the narrator from a doctor character, which was contributing to conflation of research and clinical care, or a patient character, which was perceived as less effective because of a lack of authority, to a non-character-based outside voice. Additional revisions are described in [Cho et al. 2017].
