Engaging the public in governing population-based medical records research

The Rochester Epidemiology Project (REP) links together nearly all of the medical records of Olmsted County, MN, residents for research purposes. Competing health care providers collaborate, making the county one of the few places where population-based medical records studies can be conducted. Although it has existed since 1966, few residents know what the REP is or that their records are part of it. We will report on a 2011 survey about residents' awareness of the REP and opinions about population-based, medical records research. As the REP is about to expand to more counties, REP leadership took the opportunity to transform its relationship with the community. We conducted a public engagement process to glean residents' recommendations for REP operations and expansion. Over twenty residents (diverse in age, race/ethnicity, sex, occupation and education) participated in a four-day engagement process split over two weekends. Participants heard educational presentations and had opportunities to ask questions of experts. Professional facilitators engaged participants using structured exercises, small group discussions and large group deliberations. Sessions were audio-recorded; recordings were transcribed and analyzed. Deliberations focused on: privacy and confidentiality; communication strategies; registry enrollment (including opt-in vs. opt-out); study recruitment procedures; and the role for the community in REP governance. Participants discussed trade-offs between protecting personal privacy and promoting public health research. Interestingly, most participants recommended continuing an opt-out enrollment process, though a few persistently disagreed. Results will be shared demonstrating that deliberation occurred and showing how public input is shaping REP operations.