The North American Primary Care Research Group held its Practice Based Research Networks Conference on June 28-30th in Bethesda, Maryland. The conference, which brought together primary care providers, clinical researchers, and patient and community advocates, was centered on engagement of communities of practice based research networks, patients, clinicians and practices.
Workshops and presentations updated attendees on current definitions of engagement and on initiatives in place to encourage stakeholder engagement from the individual patient level to the health systems level. Oral presentations explored engagement-related research in clinical encounters, electronic medical records, the patient-centered medical home, practice based research methods, pediatrics, quality improvement & practice facilitation, and stakeholder engagement.
Major take-homes from the conference were strategies for researchers and providers to increase stakeholder engagement in their work. Particularly relevant to the research community was the emphasis on engaging patients and communities from the earliest phases of a study, including concept development and study design. To this end, one aspect of the conference that made it unique was the group of patient and community advocates in attendance. These individuals were prime examples of engaged community stakeholders: they recognized that their thoughts and opinions have value in decision-making processes for research and practice. They were able to use their first-hand experience to provide perspectives on best practices for engaging stakeholders to translate research into real world change that improves the health of the communities they serve.
It seemed to me that the most successful patient engagement projects presented at the conference came from researchers and research teams that truly valued patient opinions, and had personalities that made their interactions with the community feel organic and authentic, rather than formal and forced. Moving forward, I suspect that this could be an issue for the research community; if we begin to expect stakeholder engagement as a requirement for good research (as it should be), how do we keep community-researcher interactions natural and untainted by the formality that comes with regulatory guidelines?
The Patient Centered Outcomes Research Institute (PCORI) was well represented as a leader in the patient engagement field; many attendees presented PCORI-funded work, and PCORI officers assisted in running the first plenary, entitled “What is Engagement”. Despite PCORI’s continued support of engagement initiatives, attendees still highlighted funding as a major barrier to fostering patient and community engagement. Many funders have yet to recognize that in many cases, projects that explore patient engagement do not follow typical research protocol; they are grassroots, and if truly patient-driven, must be relatively open-ended when they commence. Funding entities must adapt and become more comfortable with non-traditional research proposals to foster stakeholder engagement.
The Center for Research on Personalized Health Care presented a poster board at the conference, and I, along with Research Associate Connor Drake, had the opportunity to network with the NAPCRG PBRN community and receive feedback on our research in partnership with Duke Family Medicine. The poster, entitled “Personalized Health Planning in Shared Medical Appointments for Individuals with Type II Diabetes: Pilot Study”, outlined the study’s approach for assessing feasibility of personalized health planning within a shared medical appointment. The work was well received, and conference attendees were eager to hear results of the pilot in the future.