TELL US A STORY ABOUT WHEN PRIMARY CARE WORKED FOR YOU

The title above appropriately reflects the theme of the first Patient-Centered Primary Care Policy and Advocacy Preconference, held in conjunction with the 2013 NAPCRG Annual Meeting in Ottawa, Ontario, Canada, November 2013. This conference brought together 10 dyads, shown in Table 1, of patients and their primary care providers to learn about primary care, primary care research, and patient-centered outcomes research. The interactive conference included a full-day preconference, attendance at NAPCRG research presentations, and a second half-day debrief and learning group held towards the end of the NAPCRG meeting. The preconference featured several lectures from Perry Dickinson and Valerie Gilchrist, plenty of small group discussion and storytelling, and a lunch conversation with Joseph Selby, Director of the Patient-Centered Outcomes Research Institute (PCORI); David Meyers, Agency for Healthcare Research and Quality (AHRQ); and Nancy Mason MacLellan, Deputy Director, Program Delivery Research Capacity Development, Canadian Institutes of Health Research.

The goal of the event was to put a name and face to primary care research; to provide important stories to go along with the medical evidence for primary care. Policy makers like stories, and primary care research has not been effective at bringing these stories to our policy makers. The patient-primary care provider dyads agreed with the need for improved research policy and advocacy for primary care and patient-centered research. This combination of needs prompted the group to call for a series of patient engaged programs for long-term implementation within NAPCRG including: patient leadership within NAPCRG, broader patient involvement in NAPCRG strategic planning, program development, annual meeting participation, and patient-provider dyad advocacy work with research funders including elected officials, funding agencies, and academic research organizations.

The NAPCRG Patient-Centered Primary Care Policy and Advocacy preconference provided several new lessons. First, patients and their primary care providers are eager to work with each other on topics and areas outside of the individual direct patient care. We heard many stories from the patient/provider dyads about how they might impact their local community health. For instance, one patient and her primary care provider told about their work on identifying and mitigating radon exposure in their small rural Iowa farm town. They have now partnered with several researchers at the University of Iowa to further this research and disseminate it more widely throughout Iowa. Second, patients want to become more involved in the research agenda at NAPCRG. This spring, several participants from the conference will travel to Washington, DC, to share their experiences and needs at the annual Family Medicine Congressional Conference. Their trip will include an advocacy visit to discuss patient-centered primary care outcomes research with their federal legislators. Another patient will be joining the NAPCRG Board strategic planning retreat. Patients and providers want to judge posters at NAPCRG’s Annual Meeting and present the “People’s Choice Award” to the research with the most appeal to patients and primary care providers.

Third, the space where patients and their primary care provider interact is crucial to the translation and implementation of high quality health care. The participants were adamant that the most important research that might help them is research that provides information and tools for conversations, negotiations, and care between the patient and their primary care provider. Efforts that only engage the practice, the specialist, the physician are not adequate. Efforts that only target the patient may not be sufficient. We believe that the dyad is unique structure for enhancing patient-centered outcomes resmearch.

NAPCRG planners started this process hoping to find patients and physicians willing to advocate for primary care research. What we got is a cadre of activated patients and physicians that want to be part of everything NAPCRG does. NAPCRG members can expect to see more patient engagement in the coming years, resources for patient engagement and participatory research, and patient and primary care provider leadership within NAPCRG. And they might even judge your research for the People’s Choice Award.

• © 2014 Annals of Family Medicine, Inc.