Approaching patient engagement in research: what do patients with cardiovascular disease think?

Lila J Finney Rutten,1,2 Megan A Morris,1,2 Lisa M Schrader,1 Sheila M Manemann,2 Jyotishman Pathak,1,2 Robert Dimler,3 Veronique L Roger1,2 1Robert D and Patricia E Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, MN, USA; 2Department of Health Sciences Research, Mayo Clinic, Rochester MN, USA; 3The Rochester Coronary Club, Inc., Rochester MN, USA Abstract: Movement toward patient-centered health care must be supported by an evidence base informed by greater patient engagement in research. Efforts to better understand patients’ interest in and perspectives on involvement in the research process are fundamental to supporting movement of research programs toward greater patient engagement. We describe preliminary efforts to engage members of a community group of patients living with heart disease to better understand their interest and perspectives on involvement in research. A semi-structured focus group guide was developed to probe willingness to participate in the following three phases of research: preparation, execution, and translation. The focus group discussion, and our summary of key messages gleaned from said discussion, was organized around the phases of research that patients may be involved in, with the goal of delineating degrees of interest expressed for engagement in each phase. Consistent with what is known from the literature, a clear preference for engagement during the preparation and translation phase of the research process emerged. This preliminary conversation will guide our ongoing research efforts toward greater inclusion of patients throughout the research process. Keywords: patient engagement, phases of research, patient-centered care, research translatio