262407 Engaging the public in governing population-based medical records research

Wednesday, October 31, 2012

J. Eline Garrett, JD , Health Policy and Public Engagement Consultant, Minneapolis, MN
Caroline Barnhill, MPH , Founding Director, TCB Health, Arlington, VA
Leona Han, BA , Biomedical Ethics Research Unit, Mayo Clinic, Rochester, MN
Jennifer McCormick, PhD, MPP , Biomedical Ethics Research Unit, Mayo Clinic, Rochester, MN
Angela Witt Prehn, PhD , School of Health Sciences, College of Health Sciences, Walden University, Minneapolis, MN
Marguerite Robinson, MAR, MA , Biomedical Ethics Research Unit, Mayo Clinic, Rochester, MN
Walter Rocca, MD, MPH , Divisions of Epidemiology & Neurology; Co-Director, REP, Mayo Clinic, Rochester, MN
Jennifer St. Sauver, PhD, MPH , Division of Epidemiology, Mayo Clinic, Rochester, MN
Barbara Yawn, MD, MSc , Co-Director, REP, Olmsted Medical Center, Rochester, MN
Barbara Koenig, PhD , Institute of Health & Aging, UCSF School of Nursing, San Francisco, CA
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.

Learning Areas:
Ethics, professional and legal requirements
Public health or related research

Learning Objectives:
1. Discuss the transformative value of public engagement to generate recommendations for the governance of population-based medical records research; 2. Describe how participants deliberated to balance their concerns about the Rochester Epidemiology Project's practice with the promise of its research benefit.

Keywords: Epidemiology, Community Participation

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I was the lead facilitator for and co-designed the REP public engagement process. I am an experienced public health professional who uses public engagement as a tool for improving public health policy.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.