Madrid S, Tuzzio L, Stults CD, Wright LA, Napolitano G, Dillon E, Tabano H, Greene SM., J Patient Cent Res Rev. 2016;3:159-66., 2016 Aug 12
Cheryl Stults, Ph.D., Assistant Scientist
AbstractThe Health Care Systems Research Network’s (HCSRN) Patient Engagement in Research Scientific Interest Group (PER SIG) held a half-day workshop for researchers attending HCSRN’s 22nd annual conference, April 16, 2016, in Atlanta, Georgia.
The workshop blended didactic and interactive content to facilitate co-learning. Both researchers and patient partners developed the content, including three broad topics: engagement of patient partners in developing research studies, nurturing partnerships, and assessing the impact of patient engagement in research. Each module presented approaches relevant to the specific topic, including lessons from the literature and in-the-field experience. Patient partners reflected on their experience related to each module, and the interactive portion included small group exercises and in-depth discussion.
Workshop attendees (n=32) collectively contributed to suggestions for future work in the area of patient-engaged research.
Conclusions reached by workshop planners and attendees included the recognition that engaging patient partners in research requires a set of skills not normally used or even valued in scientific research methods and requires longer timelines than those generally accepted by research funding organizations. Effective engagement requires a paradigm shift from researchers as all-knowing to scientific team members who acknowledge the importance of patient partners as co-equal. When engaging patients in research, every aspect of engagement should be conducted with an emphasis on equality among partners and the stated agreement that patient partners bring valid expertise––their experiences as patients––to the research process.