PaCE Builds on the Tradition of Responsible Research Within NAPCRG

Participatory research has been foundational to the values of NAPCRG. The document, “Responsible Research with Communities: Participatory Research in Primary Care,”¹ together with the recommendations for NAPCRG, was adopted as organizational policy by the NAPCRG Board of Directors and membership at the NAPCRG Annual Meeting on November 6, 1998, in Montreal, Canada. This document was further amended with “Engaging with Communities, Engaging with Patients: Amendment to the NAPCRG 1998 Policy Statement on Ethical Research with Communities”² in 2014. These policy statements offer considerable insights into both the practice of participatory research and its benefits.

In 2013, a group of 10 invited clinician–patient dyads convened as a pre-conference at the NAPCRG Annual Meeting in Ottawa, Canada. During that session, these dyads were introduced to the concepts of primary care, primary care research, advocacy, engagement, and related topics. From this session, the Patient and Clinician Engagement (PaCE) community originated.

The PaCE mission is to develop a robust community of patients and primary care providers with knowledge and understanding of the unique features of patient-centered outcomes research related to primary care. Participatory health research emphasizes co-creation, reciprocity, trust, active participation, and shared decision making from project start to finish, as well as the resilience, capabilities, and agency of people from these groups.^3,4 A systematic review examining the impact of participatory health research found that studies using participatory health research appropriately (not as tokenism)⁵: (1) ensure the cultural appropriateness of intervention implementation; (2) enhance recruitment and retention; (3) help those implementing (clinic teams in our case) to build their competence to negotiate and solve conflicts; and (4) promote the maintenance of program outcomes and unanticipated positive systemic changes.⁴

Supported with seed money from NAPCRG and later funding from Eugene Washington Awards from the Patient Centered Outcomes Research Institute (PCORI) of the United States from 2015-2019 and hosted by NAPCRG, PaCE grew and matured. To demonstrate its commitment to inclusion of patient voices, NAPCRG added 2 voting Patient Representatives to the Board in 2016: one US Representative and one Canadian Representative with staggered terms.

Since 2014, PaCE has hosted a Pre-Conference Program each year providing a patient and community-focused workshop for more than 250 patient/community, clinician, and researcher participants. Many of these participants have participated as or with patient and community partners in primary care research. PaCE members have also published peer-reviewed articles in the Annals of Family Medicine, Canadian Family Physician, and Family Practice; presented Oral and Poster Presentations; hosted webinars; and provided in-person seminars in Canada, Mexico, and the United States.

In 2021, PaCE became a committee. Since officially forming the PaCE Committee, the committee has established a mandate, specified terms of membership, selected co-chairs, and held monthly meetings. Among early accomplishments, the committee has:

• Created a PaCE Distinguished Service Award for a patient/community member who has made an exceptional impact on primary care research.

• Established a “PaCE Approved” Pin and criteria for award. The PaCE Approved Pin is awarded on-the-spot during the NAPCRG Annual Meeting to Poster or Research presenters who demonstrate patient or community engagement as part of their research.

• Obtained approval from the Board create a Scholarship Fund to enable bringing patients and community members to NAPCRG Annual Meetings.

As a NAPCRG committee, PaCE has commitments to the primary care community and the greater global patient/community it represents to make it more diverse, equitable, and inclusive; as well as maintaining responsible research which uses participatory approaches. PaCE Committee commitments include:

• Nurturing, mentoring, and supporting the Patient Representatives on the NAPCRG Board.

• Advocating for ongoing patient/community engagement within primary care research and NAPCRG.

• Co-creating year-long educational activities such as: a Learning Series; development of Best Practices in Patient-Oriented Research; policies related to patient/community compensation in research projects; and establishing some funding strategies for those who are unable to attend the NAPCRG Annual Meeting without funding support.

In the fall of 2023, we will host a Pre-Conference (Pre-Con) Program at the 51st Annual Meeting of NAPCRG which is focused on identifying the characteristics of the “Just-Right Researcher,” that is, a Primary Care Researcher who is well suited to work closely with patient and/or community member partners on a successful and meaningful research project. The Pre-Con will invite teams of participants to develop their ideas on the subject. PaCE members have already created a similar model for the “Just-Right Patient Partner” which will be presented as a Poster during the 51st Annual Meeting as well.

• © 2023 Annals of Family Medicine, Inc.