Following 3 months of active planning, a group of more than 30 researchers, patient partners, patient engagement advocates and representatives from the Patient Centered Outcomes Research Institute (PCORI) met at the Daniels Fund meeting space in Denver, Colorado on October 26-28, 2016 to begin the process of developing a systematic approach to measuring the impact of patient engagement on the context, conduct, and outcomes of research. The workshop was hosted by the Patient Engagement in Research Scientific Interest Group of the Health Care Systems Research Network (HCSRN) and sponsored by Eugene Washington PCORI Engagement Award #3398. CCEPH research scientist Robert Greenlee, PhD, MPH, is the Principal Investigator for the PCORI-funded workshop, and CCEPH’s Deb Multerer is the project manager.
Recognizing that approaches to measuring patient engagement vary considerably and that inconsistency in measurement makes comparisons across time and studies difficult, this workshop’s goal was to assemble a community of practice to develop and test a core suite of recommended measures to evaluate the impact of patient engagement in research in a systematic and scalable way.
The workshop aimed to embody the principles of engagement, and patient partner advisors provided strong voices and decades of experience as patients and community representatives. Researchers and stakeholders collaboratively set the agenda and tone for the workshop. In addition to extensive targeted discussions on ways in which engagement can affect research and its products, the agenda included keynote presentations by Laura Forsythe, PhD, MPH, Associate Director, Evaluation and Analysis, PCORI, and Danielle Lavallee, PharmD, PhD, Research Assistant Professor, Division of General Surgery, University of Washington.
Future work in the remainder of the PCORI engagement award funding period will include mapping relevant core components to reportable metrics and building out a community of practice through continued engagement with workshop attendees, as well as identifying other individuals, instruments and communities to enhance the piloting of the selected methodology.