Supporting the Primary Care Research Infrastructure Through Advocacy: A Reflection from the NAPCRG Research Advocacy Committee
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* Winston Liaw
* Sabrina T. Wong

Whether it’s running among the saguaro cacti in Tucson, hiking up Mont Royal in Montreal, or listening to Bill Hogg play the drums, it’s the moments with friends that we remember the most fondly. These are the serendipitous encounters where connections are strengthened and research plans are hatched. Although we did not start working together until 2016, we both first attended NAPCRG in 2009 after being encouraged by our mentors (Andrew Bazemore for W.L. and Jeannie Haggerty for S.W.) and continue to show up to be with our community, learn new skills, stay up-to-date, and nurture our love for this field.

Through conversations with our friends at NAPCRG, we came to recognize how important advocacy would be to the future of primary care. In 2016, we met at the Annual Meeting in Colorado Springs as members of the Research Advocacy Committee and later served as the Committee’s co-chairs. Started in 2013 with Jack Westfall as the inaugural Chair, the Research Advocacy Committee aims to provide tools, training, and resources for NAPCRG members, disseminate primary care research advocacy messages, identify and build partnerships with organizations, and promote primary care research opportunities to define the direction of primary care research.1

## Provide Advocacy Resources

Recognizing limitations in the traditional advocacy approach to member engagement, the Committee developed a US-focused Advocacy Task Force. Historically, professional societies ask members, via e-mail, to send electronic messages to their representatives and senators. In addition to a low response rate, the individuals who respond may not be constituents of the elected officials who are able to advance legislation. To address this issue, the task force recruited individuals who lived in the districts or states of elected officials who are on committees that have jurisdiction over legislation relevant to primary care and provided them with training, scripts, materials, and support. In a survey of task force members (15 respondents out of 35 members), participants communicated with elected officials 68 times, 13% of which were face-to-face visits.

The Canadian side of the Advocacy Committee observed their American counterparts and reflected on how to develop advocacy resources within the Canadian environment. Rather than approaching elected members of Parliament, we started working to strengthen and facilitate connections between the College of Family Physicians of Canada and researchers applying for large Community-Based Primary Health Care grants from the Canadian Institutes for Health Research (CIHR). With the Action Group for Advocacy in Research (AGAR), originally formed in 2015, the Canadian side of the NAPCRG Advocacy Committee worked collaboratively to raise the profile of primary health care research.

## Disseminate Research Advocacy Messages

In March 2018, Congress considered whether to fund a study to assess the federal strategy for health services research. This debate followed several years of US presidential budgets that called for the dissolution of the Agency for Healthcare Research and Quality (AHRQ) and a transfer of limited pieces of its portfolio into the National Institutes of Health,2 leaving many areas without a federal home.3 With the help of advocacy messaging honed by the Committee, the Council of Academic Family Medicine (CAFM; which includes NAPCRG, the Society of Teachers of Family Medicine [STFM], the Association of Departments of Family Medicine [ADFM], and the Association of Family Medicine Residency Directors [AFMRD]) successfully advocated for the inclusion of primary care research in the study’s charge. The authors of the resulting report concluded that primary care research addresses a central component of the health care system, is severely underfunded, and needs a home or hub within the federal government.3 This landmark 2020 report and the recently released National Academies of Sciences, Engineering, and Medicine report on primary care build the case for greater investment in our important field.3,4

Another example of advocacy messaging is the committee developing and releasing a position statement condemning information blocking, or the practice of interfering with the exchange of electronic health information.5 Health informatics is an important research tool in primary care; unfortunately, researchers are reporting increasing difficulty accessing the data stored in electronic health records and registries. This statement will guide future NAPCRG positions on relevant legislation so that researchers will have access to the data needed to improve care.

## Build Strong Partnerships

The committee has used several strategies to promote primary care research in both the United States and Canada. In the Unites States, we have responded to requests for input regarding the strategic directions of agencies (AHRQ and Patient-Centered Outcomes Research Institute [PCORI]), supported reauthorization efforts (PCORI), and nominated primary care leaders for positions on advisory (AHRQ) and governing bodies (PCORI). When engaging with federal partners, our communication highlights the importance of primary care, the uniqueness of our research methods, and the lack of federal support.6–10 The committee also sought to increase awareness among NAPCRG members regarding the breadth of funders for primary care research and hosted a workshop which included leaders from the Centers for Disease Control and Prevention. In Canada, our members have similarly advocated for a robust primary care presence within CIHR, including an effort to create a primary care institute within CIHR and enhance funding for the Strategy for Patient Oriented Research Primary and Integrated Health Care Innovations Network.11

These partnerships include shared work with closely aligned organizations. For example, the NAPCRG Research Advocacy Committee is an important resource for CAFM. As opportunities arise to shape national conversations relevant to primary care research, CAFM offers an effective model to make sure that the family medicine coalition speaks with a unified voice, thereby giving greater weight to its recommendations. CAFM also provides a mechanism for the integration of diverse perspectives. When issues emerge, leaders from the CAFM organizations are invited to comment, making the response from the academic family medicine community more robust and ensuring that the impacts to departments, residents, medical students, educators, and researchers are considered. In recent years, CAFM sent a letter to PCORI to request that its strategic priorities include primary care and to AHRQ to suggest Evidence-Based Practice Center report topics that are useful to practicing primary care clinicians. During conversations related to primary care research, these family medicine organizations look to the NAPCRG Research Advocacy Committee for leadership.

The Research Advocacy Committee remains an important source of inspiration for the College of Family Physicians of Canada AGAR, which advocates for increased funding for family medicine and primary care research. In recent years, AGAR has completed a: literature review and analysis of the experience in the United Kingdom with Practice-Based Research Networks and potential lessons for Canada;12 citation analysis, providing descriptive information about the most cited primary care researchers and peer-reviewed articles;13 and study of the factors that are associated with primary care research success, based on interviews with 6 of the researchers who were identified in the citation analysis.14 These activities demonstrate the impact of primary care research and provide a blueprint for how to strengthen the primary care research infrastructure.

## Promote Primary Care Research Opportunities

Finally, the Committee has promoted research opportunities that shape the future of primary care research. For example, in partnership with NAPCRG members, Jack Westfall contributed to the Patient and Clinician Engagement Program (or PaCE), where dyads of patients and primary care clinicians learn about primary care research, grant review, proposal development, and advocacy. Funded by PCORI, this program highlights NAPCRG’s deep expertise in and commitment to community engagement. Another example is when committee members facilitate connections for research opportunities through face-to-face network events held in conjunction with NAPCRG. For instance, the Transdisciplinary UndersTanding of Research in Primary Health Care (TUTOR-PHC) alumni reception brings together students and early-to-senior researchers and creates a stronger network of researchers to improve the science of primary care. TUTOR-PHC is the only inter-professional primary health care training program in Canada.15

None of these accomplishments would be possible without Hope Wittenberg and Sue Emmer (who lead government relations for CAFM). Specifically on the US side, they devised strategies, identified opportunities, met with congressional staff, developed programs, and communicated with NAPCRG members. Hope and Sue taught a generation of researchers how to advocate for primary care research in the United States—and have produced tools that can be used regardless of country. After 30 years in this role, Hope is retiring at the end of 2022, signaling the end of an era. With an openness to collaboration, profound advocacy knowledge, and commitment to primary care, she exemplifies the values of the mentors we have had in the NAPCRG community. And like so many of our NAPCRG research mentors, Hope forged a new path, and in turn, changed the landscape of primary care research.

*   © 2022 Annals of Family Medicine, Inc.

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