Table 3.

Examples of findings from various deliberative patient-engagement activities

Key finding	Source of finding
Key finding 1: balancing priorities and motivators for the PMI When discussing features that might increase participation rates, participants prioritize several features above being included as partners in the research design and process or having opportunities to learn how research will be conducted. Features prioritized, in rank order, were periodic updates about the study’s progress, access to copies of data collected and individual research results, and an ability to recruit friends and family members to participate in study activities along with them.	Open-forum discussions held at Geisinger (January 2016) with enrolled MyCode participants
Key finding 2: creating cohort strategies Participants supported cohort strategies such as “Senior Siblings” (siblings older than 65 who could participate together). Participants wanted gatherings, i.e., opportunities to socialize and “do” research with others (including friends and family); however, when annual family reunions were suggested as a possible time to do this, participants said that they do not get to see family often enough and this would not be how they would want to use the precious family time they do get to enjoy. Alternative suggestions included church and community fundraiser-style events and co-worker activities. Participants wanted to feel connected to others throughout the PMI cohort and suggested use of webinars.	Open-forum discussions held at Geisinger (January 2016) with enrolled MyCode participants
Key finding 3: ideas to promote involvement and retention Participants identified several features that would make PMI “more fun, interesting, and interactive,” including a research idea incubator, accelerator, or “Shark Tank”–like program; an online or mobile research dashboard to learn the status of their own specimens and data in studies and research progress; and social components (e.g., “meet-ups”).	Open-forum discussions held at Geisinger (January 2016) with enrolled MyCode participants
Key finding 4: input on research design, questions, and methods Participants want the PMI to study the health impact of environmental exposures (suggesting several research priorities, e.g., water from nearby fracking activities, effects of pesticides and herbicides in the food chain, and air quality related to automobile emissions and materials); however, when discussing the inclusion of microbiome studies, participants were divided (with participants remarking that swabbing items “is just too much, ” emphasizing a need for “edutainment” about microbiome studies before data collection, and expressing that willingness to contribute would vary depending on whether data could be automatically transferred from monitoring devices placed in the home/office rather than requiring manual submission). Participants preferred iOS and Android devices over Windows-based ones and expressed interest in continuing to use wearables and other devices they already own.	Open-forum discussions held at Geisinger (January 2016) with enrolled MyCode participants
Key finding 5: depositing research results in the EMR Adviser input about having research data in EMR included queries as to (i) whether research results could be used clinically to avoid repeating tests and (ii) whether patients who drop out will be treated differently by providers if the research EMR is retained.	Input from patient adviser, presubmission, grant application, reviewers
Key finding 6: obtaining laboratory or test data in the patient portal immediately when available The majority of patients felt confident about their ability to access their health information, saying it helps them to prepare for discussions with their health-care provider.	Survey of a sample of patients with patient portal access to their EMR
Key finding 7: importance of incorporating patient input at the beginning of the research design phase Patient advisers said they would not participate in a proposed international, randomized, clinical trial because they perceived one treatment as being superior to the others. The advisers also proposed helpful modifications to a mobile app developed for cancer patients, but by the time they were asked, the app could not be changed.	Input from PCORI P2P grant head and neck cancer patient advisers

EMR, electronic medical record; PCORI P2P, Patient-Centered Outcomes Research Institute Pipeline to Proposal; PMI, Precision Medicine Initiative.