Nora Henrikson, PhD, MPH - Kaiser Permanente and University of Washington

ELSIconversations - March 26, 2021

Background. Cascade screening is key to the promise of precision medicine, but incomplete or non-disclosure to relatives is common. Health system-mediated direct contact programs could increase risk notification and screening, but patient and family preferences are not well understood. Methods. We conducted four focus groups (n=32), based in human centered-design methodology, with either probands or adults with a family history of cancer receiving care at Kaiser Permanente Washington. We grounded the sessions in a fictional family based on real clinical cases, and a scenario where the proband asked her clinical team to inform her relatives. Using storyboard techniques, participants individually proposed a direct contact process, then discussed the benefits and concerns of each. We conducted thematic analysis of the storyboards and the focus group transcripts. Results. Participants articulated several benefits of direct contact, including increased awareness, access to clinical testing and follow up, and clinical benefit. Concerns included protecting privacy of both index patients and relatives, of honoring relatives’ right not to know, and insurance discrimination. Multiple participants independently suggested a pre-consent process, where both patient and relatives provide permission to be informed before results become available; this was endorsed by other participants. Preferences differed about which team member would contact relatives, how relatives would be contacted, and what messages were used. Participants suggested that clear communication and follow-up steps were priorities. Conclusions. Human-centered design is a valuable method for rapidly eliciting preferences and meaningfully engaging patients and families in a novel direct contact program.