President's Message 

NAPCRG – Engagement as Strategy

Various disciplines in health care including family physicians have come to know that narratives/stories and tacit knowledge provide insight into better understanding of a disease over the life span of the patient/individual.^1-4 It is for this reason that patient-centered medicine has transformed how family medicine is taught and subsequently practiced.^1-4 

Engagement enhances a patient’s/community's ability to address their own health needs and disparities by ensuring that researchers are aware of the individual’s and community’s priorities.^5,6 Patient/community engagement enhances, the agenda, the approaches/methods, the quality and impact of the research by transforming our understanding of the findings and ensuring that the dissemination is grounded in the meaning/culture of the patient/individual or the community.

Language is paramount. Speaking about the patient-partners/participants in a research project as subjects (subordinates) dehumanizes and causes them to feel less than the experts that they are. We are all experts in our own lived experience so please take the time to get to know the people that you work with which may be patients/communities, health care providers, decision makers, funding organizations as we all have a role to play in patient/community engagement.

While patient engagement is increasing, dissemination efforts are often done without the patients/community members and manuscripts are still published with only the academic authors listed.

PACE Committee

Did you know that NAPCRG has a Patient and Clinician Engagement (PaCE) Committee? Did you know that NAPCRG has two patient/community representatives (one from the USA and one from Canada) on our Board of Directors? To my knowledge, this was the first organization to establish Responsible Research Guidelines⁷ which were updated in 2009⁸. Consider getting to know some of the members of the PaCE Committee and learn more about what they are doing. You can contact the PaCE Committee at pace@napcrg.org.

How can you be involved? NAPCRG needs to continue to provide leadership in role-modelling and training; as well as the provision of educational opportunities that support authentic patient/community engagement.⁹

References:

1. Stewart M, Brown JB, Weston WW, McWhinney IR, McWilliam CL, Freeman TR. Patient-Centered Medicine: Transforming the Clinical Method. Thousand Oakes, CA: Sage Publications Inc., 1995.
2. Stewart M, Brown JB, Weston WW, McWhinney IR, McWilliam CL, Freeman TR. Patient-Centered Medicine: Transforming the Clinical Method, 2nd Ed. Oxon, UK: Radcliffe Medical Press, 2003.
3. Stewart M, Brown JB, Weston WW, McWhinney IR, McWilliam CL, Freeman TR. Patient-Centered Medicine: Transforming the Clinical Method, 3rd Ed. London, UK: Radcliffe Medical Press, 2014.
4. Brown JB, Thornton T, Stewart M. Challenges and Solutions: Narratives of Patient-Centered Care, 1st Ed. London, UK: Radcliffe Medical Press, 2017.
5. CTSA Community Engagement Key Function Committee Task Force. Principles of Community Engagement (2nd ed.). Washington, DC: NIH Publication No. 11-7782; 2011.
6. Jagosh J, Macaulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, Sirett E, Wong G, Cargo M, Herbert CP, Seifer SD, Green LW, Greenhalgh T. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 2012 Jun;90(2):311-46. doi: 10.1111/j.1468-0009.2012.00665.x.
7. Macaulay AC, Commanda LE, Freeman WL, et al. Participatory research maximizes community and lay involvement. North American Primary Care Research Group. BMJ. 1999;319(7212):774-778.
8. Allen ML, Salsberg J, Knot M, LeMaster JW, Felzien M, Westfall JM, Herbert CP, Vickery K, Culhane-Pera KA, Ramsden VR, Zittleman L, Martin RE, Macaulay AC. Engaging with communities, engaging with patients: amendment to the NAPCRG 1998 Policy Statement on Responsible Research with Communities. Fam Pract. 2017 Jun 1;34(3):313-321. doi: 10.1093/fampra/cmw074.
9. College of Family Physicians of Canada. The Section of Researchers’ Blueprint for Family Medicine Research Success. Accessed on May 15, 2023 from http://www.cfpc.ca/uploadedFiles/Directories/_PDFs/CFPC_Blueprint-Report.pdf.

Prepared by Vivian R Ramsden, RN, PhD (President)