Sharing Experiences and Expertise: The Health Care Systems Research Network Workshop on Patient Engagement in Research

Authors

Sarah Madrid, Institute for Health Research, Kaiser Permanente ColoradoFollow
Leah Tuzzio, Group Health Research InstituteFollow
Cheryl D. Stults, Palo Alto Medical Foundation Research InstituteFollow
Leslie A. Wright, Institute for Health Research, Kaiser Permanente ColoradoFollow
Gina Napolitano, patient partnerFollow
Ellis Dillon, Palo Alto Medical Foundation Research InstituteFollow
Heather Tabano, Institute for Health Research, Kaiser Permanente ColoradoFollow
Sarah M. Greene, Health Care Systems Research NetworkFollow

Publication Date

8-15-2016

Keywords

patient engagement, research, methods

Abstract

The 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.

Recommended Citation

Madrid S, Tuzzio L, Stults CD, Wright LA, Napolitano G, Dillon E, Tabano H, Greene SM. Sharing experiences and expertise: the Health Care Systems Research Network workshop on patient engagement in research. J Patient Cent Res Rev. 2016;3:159-66. doi: 10.17294/2330-0698.1272