Patient engagement in research is essential to translating the best evidence into clinical practice with the ultimate outcome of improving the health of a population. Too often, community partners in health research consist of health professionals and organizational leaders. Patient and community engagement has long been a prominent component of NAPCRG.1 Growing from this robust history, the NAPCRG Patient and Clinician Engagement (PaCE) committee develops programs to foster a diverse community of patients, researchers, and primary care providers.2 PaCE identifies partners who are the “non-usual suspects”—people who are not necessarily medical or public health professionals, who are not aligned with a particular or personal research policy agenda, and whose local influence is defined within the context of the community versus job titles or credentials.3 PaCE leadership has included patients and clinicians from the beginning, and includes 2 Board members, 1 from the United States and 1 from Canada.
Currently Kirk Mason (Canada) and Arturo Martinez-Guijosa (US) serve as patient representatives on the NAPCRG Board of Directors. We asked each of them to describe their participation in NAPCRG and vision for PaCE patient engagement, and board membership. They offer their reflections on their experience with NAPCRG and on patient engagement in the future.
Kirk Mason
My first NAPCRG meeting was in 2015 in Cancún, México. As I was finishing my undergraduate degree, I became my grandfather’s primary caregiver. It was in this journey that I had discovered the importance of advocacy in the health care system. I saw NAPCRG as a place where I could learn more about the world of health care and find a way to support its improvement.
I had been volunteering on a patient steering committee and Dr David Kaplan, a primary care clinician who led the local program, approached me to team up with him. We attended NAPCRG as a dyad through the PaCE pre-conference to learn more about patient, clinician, and community engagement and advocacy. What we found there was a community of like-minded people who wanted to better the world of primary care research.
Every year when I attend NAPCRG, I learn so much, meet so many interesting people, have so many meaningful conversations and most importantly—I leave inspired and eager to do more to impact the health care system.
Arturo Martinez-Guijosa
I attended my first NAPCRG Annual Meeting in the fall of 2015 at Cancún. I attended NAPCRG because I worked in a federally qualified health clinic (FQHC) as an advocate and social service provider helping underserved communities get access to care. In my role, I witnessed the inequities and lack of community voice in our health care system. NAPCRG was a place where our health care providers were willing to listen and welcomed me to participate.
Dr Emily Godfrey, a Seattle-based primary care physician and researcher, encouraged me to attend my first NAPCRG PaCE pre-conference as her patient partner. We shared a belief that all people deserve access to high-quality primary care and wanted to make access to reproductive health care easier for underrepresented youth in the Greater Seattle area. The people and passion keep me coming back to NAPCRG. Everyone at NAPCRG cares about improving the health care of their communities. It is a very nurturing place to learn from each other, share ideas, and have fun while connecting.
Future of Patient Engagement
Both of us came to NAPCRG from our positions in the community as caregivers; that is, caring for a family member and advocating for underserved community members. In our perspective, NAPCRG is in a position to lead the charge in making high-quality patient and community engagement common practice in primary care research. It is important to partner with communities and make decisions centered around the most vulnerable and least-represented voices. Only through full and meaningful engagement can system changes be implemented in our communities to improve the health and well-being for all.
- © 2022 Annals of Family Medicine, Inc.
