Participatory Health Research (PHR) Work Group

The Participatory Research in Primary Care Work Group promotes and supports collaborative research partnerships in primary care together with patients, communities and other stakeholder partners. Our goals include jointly collaborating on products that increase understanding and capacity for a participatory approach in primary care research; supporting primary care researchers and professionals undertaking participatory research; and advocating for participatory research policy within relevant research and healthcare organizations.

Leadership
Canadian Co-chair: Ginetta Salvalaggio, MD, MSc, CCFP
U.S. Co-chair: Paul Chandanabhumma, PhD, MPH

What is PHR?

Participatory Health Research (PHR) is an umbrella of research approaches that strive to equitably collaborate with individuals, families, community and tribal members impacted by a health topic with the goal of producing knowledge and action to improve health and health equity. Unlike traditional research approaches, PHR honors community partners as co-researchers who share decision-making power and contribute equitably throughout all stages of the research process, from defining the research inquiry to translating findings into social action. This approach also embraces mutual capacity building, enhancing community assets and resources, and prioritizes community wisdom and perspectives. The aim is not only to generate knowledge but also to create meaningful and sustainable improvements in health and health systems, particularly for the ultimate benefit of underserved or marginalized populations.

Resources:

  • Israel BA, Eng G, Schulz AJ, Parker EA. Introduction to methods for CBPR for health. In: Israel BA, Eng E, Schulz AJ, Parker EA, editors. Methods for community-based participatory research for health. 2nd ed. San Francisco: Jossey-Bass; 2013. p. 3–37.
  • Wallerstein N, Duran B, Oetzel JG, Minkler M. On community- based participatory research. In: Wallerstein N, Duran B, Oetzel J, Minkler M, editors. Community-based participatory research for health: Advancing social and health equity. 3rd ed. San Francisco: Jossey-Bass; 2018. p. 3–16.
  • Allen, M. L., Salsberg, J., Knot, M., LeMaster, J. W., Felzien, M., Westfall, J. M., Herbert, C., Gonzales, G., Vickery, K., Culhane-Pera, K. A., Ramsden, V. R., Zittleman, L., Martin, R. E., & Macaulay, A. C. (2015). Engaging with communities, engaging with patients: Amendment to the NAPCRG 1998 Policy Statement on ethical research with communities. North American Primary Care Research Group. https://www.napcrg.org/media/1270/2014pr.pdf

How PHR Applies to Primary Care Research:

In the context of primary care, PHR is especially valuable because of the discipline’s focus on person-centered, community-oriented care. Primary care is often the first point of contact with the health system, making it a critical space to explore patient experiences, community health challenges, and gaps in service delivery. 

  • Download the 2015 updated policy.
  • Download the full 1998 NAPCRG policy. 
    • The document, "Responsible Research with Communities: Participatory Research in Primary Care," 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. This document grew out of a successful workshop on Respectful Research With Communities at the 1996 NAPCRG Annual Meeting. The NAPCRG membership and Board of Directors supported and financed development of this document. The Task Force solicited comments from interested parties and incorporated many suggestions into the revisions. This policy was updated in 2015.

Why Join the CASFM - PHR Workgroup?

As a member of this work group, you’ll join a collaborative community of researchers, patients, and stakeholders dedicated to advancing participatory research in primary care. Benefits of membership include:

  • Group Listserv Access:
    • Stay informed and engaged via the work group’s email listserv, where opportunities, resources, and updates are shared.
  • Ongoing Learning:
    • Participate in virtual meetings and presentations every 2–3 months, featuring new research, best practices, and emerging issues in participatory research.
  • Annual In-Person Gathering:
    • Join the work group’s meeting events held every year at the NAPCRG Annual Conference to engage in work group planning, collaboration, and networking.
  • Workshops and Preconference Sessions:
    • Contribute to or attend workshops and preconference presentations that aim to promote awareness of and build capacity for participatory research.
  • Opportunities for Scholarship:
    • Collaborate on resources, manuscripts, and policy statements that influence participatory health research and practice within family medicine

How to Get Involved

Contact Ginetta Salvalaggio, MD, MSc, CCFP(AM), FCFP, Work Group Co-Chair at ginetta@ualberta.ca or reach out to the NAPCRG Office at napcrgoffice@napcrg.org who can help redirect your inquiry to the appropriate contact.

 

Resources

This content was curated by the Participatory Research in Primary Care Work Group as a resource for our members. We do not own the original materials, and all rights remain with the original creators. Content is provided for informational purposes only and does not imply endorsement. The Work Group is not liable for any use or misuse of this material. Please contact us with any copyright concerns.

Publications

  • Kimminau, K. S., Jernigan, C., LeMaster, J., Aaronson, L. S., Christopher, M., Ahmed, S., et al. Patient Engagement vs Community Engagement: Emerging Issues. Medical Care 2018; 56(Suppl 10 Suppl 1): S53–S57. https://doi.org/10.1097/MLR.0000000000000772

  • Chandanabhumma, P.P., Fàbregues, S., Oetzel, J., Duran, B., Ford, C. Examining the influence of group diversity on the functioning of community-based participatory research partnerships: A mixed methods study. Presented work published in American Journal of Community Psychology, 2023; 71(1–2): 242–254. https://doi.org/10.1002/ajcp.12626

  • Coombe, C.M., Chandanabhumma, P.P., Bhardwaj, P., et al. A participatory, mixed methods approach to define and measure partnership synergy in long-standing equity-focused CBPR partnerships. Presented work published in American Journal of Community Psychology, 2023; 66: 427–438. https://doi.org/10.1002/ajcp.12447

  • Chandanabhumma, P.P., Gabrysiak, A., Brush, B.L., et al. Cultivating an Ecosystem: A qualitative exploration of sustainability in long-standing community-based participatory research partnerships. Presented work published in Progress in Community Health Partnerships, 2023; 17(3): 393–404. https://www.muse.jhu.edu/article/907970

  • Gilfoyle, M., MacFarlane, A., Hughes, Z., Salsberg, J. Understanding the evolution of trust in a participatory health research partnership: A qualitative study. Presented work published in Health Expectations, 2023; 27: e13918. https://doi.org/10.1111/hex.13918

  • Markey, K., Msowoya, U., Burduladze, N., Salsberg, J., MacFarlane, A., Dore, L., Gilfoyle, M. Antecedents and consequences of health literacy among refugees and migrants during the first two years of COVID-19: A scoping review. Presented work published in Tropical Medicine and Infectious Disease, 2024; 9(5): 116. https://doi.org/10.3390/tropicalmed9050116

  • Drinkwater, J., MacFarlane, A., Twiddy, M., Meads, D., Chadwick, R.H., Donnelly, A., Gleeson, P., Hayward, N., Kelly, M., Mir, R., Prestwich, G., Rathfelder, M., Foy, R. Patient influence on general practice service improvement decision making: A participatory research mixed-methods intervention study. Presented work published in British Journal of General Practice, April 4, 2024; BJGP.2023.0263. https://doi.org/10.3399/BJGP.2023.0263

Workshops

  • MacFarlane, A., Hannigan, A., LeMaster, J., Salsberg, J., Garry, F., Mohamed, A.H., Gaspar, C., Phelan, H. Arts-based methods and meaningful partnerships for primary care research with underserved communities in Ireland and the USA (W03). Workshop presented at the 2021 North American Primary Care Research Group (NAPCRG) Annual Meeting, November 23, 2021.

  • Allen, M., Webster, F., Salvalaggio, G., LeMaster, J., MacFarlane, A., Summers Holtrop, J., Sieck, C., Manca, D. Committee for Advancing Science in Family Medicine (CASFM): Methods and Approaches to Equity in Primary Care Research (PR03). Pre-conference workshop presented at the 2021 North American Primary Care Research Group (NAPCRG) Annual Meeting, November 19, 2021.

  • Salvalaggio, G., Bennett, I., Fulda, K., Rahgozar, A., Nixon, L., Salzburg, J., Singer, A., Vickery, K., MacFarlane, A., Sturmberg, J., Martin, C., LePlastrier, K., Roche, R. The Nature of Data. Presented in pre-conference format at the 2024 North American Primary Care Research Group (NAPCRG) Annual Meeting, Quebec City, QC.

  • Gilfoyle, M., LeMaster, J., Mason, K., Salsberg, J., MacFarlane, A. Key Challenges for Patient and Public Engagement in Primary Care Quality Improvement Work (QI). Workshop, NAPCRG, Quebec, Nov 2024.

  • Haeme, R., Salsberg, J., Ramsden, V., Rabbitskin, N., Mason, K., Felzien, M., Martinez Guijosa, A.
    Exploring Ethics in Patient-Engaged Research with PaCE–CASFM–PHR. Workshop W33, NAPCRG Annual Meeting, 2024.

  • Gilfoyle, M., Mason, K., LeMaster, J., Salsberg, J., Drinkwater, J. Exploring Patient Engagement in Quality Improvement Across International Settings Using a Participatory Dilemmas Café Method. Workshop W17, NAPCRG Annual Meeting, 2024.

  • Stevens, R., Franco, M., Rios, A., Chan, B., Vickery, K., Padwa, H., Nixon, L., Salvalaggio, G., Adams, C., Daaleman, T., Williamson, A., Lowrie, R., Gelberg, L. Developing an International Collaborative Primary Care Research Agenda Around People Experiencing Homelessness. Workshop, NAPCRG Annual Meeting, Oct 30–Nov 3, San Francisco, CA.

  • MacFarlane, A., Ramsden, V., Salsberg, J., Allen, M.  Combining Participatory Health Research with Implementation Science for Health Equity: A Tale of Two Theories. Workshop WS.18, NAPCRG Annual Meeting, 2023.

  • Salsberg, J., Gilfoyle, M., Papyan, A., Basogomba, A., Allen, M., McCarthy, M., MacFarlane, A., Claudino, D. Changing the Landscape: Building Capacity for Patient & Community Involvement — Experiences from the US & Ireland. Workshop WS.29, NAPCRG Annual Meeting, 2023.

  • MacFarlane, A., Hauck, F., Griswold, K., Palmatier, F., LeMaster, J., Papyan, A., Allen, M. Participatory Health Research with Refugees and Other Migrants: Partnerships for Health Equity. Workshop WS.19, NAPCRG Annual Meeting, 2023.

  • Nixon, L., Kelly, M., Chowdhury, T., Ramsden, V., Salsberg, J., O'Rourke-Lavoie, J., Salvalaggio, G., Sampson, M., Gray, M.  When Love Breaks Down: Navigating Relationship Breakdown in Participatory Health Research. CASFM–PHR Workshop, NAPCRG Annual Meeting, 2022.

  • Peek, C.J., Green, L., Stange, K., Salvalaggio, G., Harper, D.  Making Sense of Primary Care Research: Can We Create a More Coherent and Navigable NAPCRG Conference Program? Working Forum, NAPCRG Annual Meeting, 2022.

  • Vickery, K., Williamson, A., Salvalaggio, G., Nixon, L., Gelberg, L., Adams, C.  Primary Care Research for Health Equity with People Experiencing Homelessness: Embracing Syndemics and Participatory Methods. Workshop W25, NAPCRG Annual Meeting, 2022.

  • Salvalaggio, G., Ramsden, V., Nixon, L., Barker, J., Salsberg, J., Seidlikoski Yurach, W. Participatory Ethics — Sharing Ownership of the Research Ethics Process. Workshop W09, NAPCRG Annual Meeting, 2021.

Other Presentations

  • Nixon, L. Exploring Lived Experiences of Housing Instability and Aging: The Power of Arts-Based Approaches in Participatory Research. Invited Address, General Internal Medicine Grand Rounds, Hennepin Health Care – Health, Homelessness & Criminal Justice Lab, Minneapolis, MN; Feb 20, 2025. 66 attendees.

  • Garry, F., Papyan, A., Phelan, H., Hassan, A., Salsberg, J., MacFarlane, A. Music and Singing as Arts-Based Methods to Build Capacity for Migrant Involvement in Health Research: A Mixed-Methods Study. Poster (Research in Progress), NAPCRG Annual Meeting, Quebec, Nov 2024.

  • Garry, F., Papyan, A., Phelan, H., Hassan, A., Salsberg, J., MacFarlane, A.  PPI INCLUDES – Improving Refugee and Migrant Involvement in Health Research in Ireland Using the Irish World Music Café Method. Poster, NAPCRG Annual Meeting, Quebec, Nov 2024.

  • Connolly, D., Morris, H., Bulut, O., Cottrell‑McDermott, C., Hyshka, E., Issa, T., Piggott, B., Taylor, M., Salvalaggio, G. Co-Occurring Issues Facing Patients Who Use Unregulated Drugs: Insights From a Survey in Edmonton, Canada. Poster, NAPCRG Annual Meeting, Quebec, Nov 21, 2024.

  • Twan, S., McBeth, R., Ajani, A., Dong, K.A., Hyshka, E., Sandberg, C., Srinivasan, C., Taylor, M., Umpherville, L., Varewny, V., Salvalaggio, G. Health System Innovation for People Who Use Drugs. Poster, NAPCRG Annual Meeting, Quebec, Nov 21, 2024.

  • Gilfoyle, M., MacFarlane, A., Hughes, Z., Salsberg, J. Unpacking Trust in Participatory Health Research Partnerships – A Qualitative Study in Ireland. Poster P116, NAPCRG Annual Meeting, 2024.

  • Nixon, L., Baker, D., Conroy, T., Conneely, K., Henderson, R., Horwood, C., Mierau, E., Punungwe, F.M., Sampson, M., Kelly, M. Reconnecting Older People With Experiences of Homelessness Through Co‑Designed Therapeutic Recreation Programming. Oral Presentation (Symposium: Housing Precarity in Older People with Complex Needs), CAG 53rd Annual Meeting, Edmonton, AB; Oct 24–26, 2024.

  • Nixon, L., Bagley, S., Baker, D., Conroy, T., Darr, K., Horwood, C., Mierau, E., Kelly, M. Being Seen: Mask‑Making to Explore Identity of Older People With Experiences of Homelessness and Social Isolation. Poster, CAGP–CCSMH Annual Meeting, Vancouver, BC; Sept 27–28, 2024.

  • Gilfoyle, M., Salsberg, J., McCarthy, M., MacFarlane, A. Do You Still Trust Me? Exploring Trust in Research Partnerships Over Time. Poster PS.2.156, NAPCRG Annual Meeting, 2023.

  • Drinkwater, J., Meads, D., Foy, R., MacFarlane, A., Twiddy, M. Creating and Maintaining Participatory Space to Share Organisational Decision Making With Patients in Family Practice. Poster PS.2.158, NAPCRG Annual Meeting, 2023.

  • Gilfoyle, M., Koskinas, E., Gaspar, C., Salsberg, J. Exploring How Patients and the Public Are Recruited to Advisory Boards, Groups, and Panels in Collaborative Health Research. Poster SRF196, NAPCRG Annual Meeting, 2022.

  • Gilfoyle, M., Salsberg, J., McCarthy, M., Mac Carron, P., MacFarlane, A. Exploring the Multidimensionality of Trust in Participatory Health Partnerships – A Network Approach. Poster SRF197, NAPCRG Annual Meeting, 2022.

  • Koskinas, E., Gilfoyle, M., Salsberg, J. Exploring How Patients and Members of the Public Are Recruited to Boards, Groups & Panels in Patient‑Engaged Health Research. Poster SRFP044, NAPCRG Annual Meeting, 2021.

  • Phelan, H., Garry, F., Mohamed, A.H., Papyan, A., MacFarlane, A. Research Prioritization in Migrant Health in Ireland: Toward a Participatory Arts-Based Paradigm for Academic Primary Care. Oral Presentation OP120, NAPCRG Annual Meeting, 2021.

  • Allen, M., Salsberg, J., Salvalaggio, G., Kasouaher, M. Community‑Centered Dissemination: Understanding Strategies and Building a Plan. Workshop W07, NAPCRG Annual Meeting, 2020.

  • Gilfoyle, M., Salsberg, J., MacFarlane, A. Conceptualising, Operationalising, and Measuring Trust in Participatory Health Research Networks: A Scoping Review. Poster SRF013, NAPCRG Annual Meeting, 2020.

  • Niranjan, V., Salsberg, J., Doolan, I., MacFarlane, A., McCarthy, M., Hughes, Z., Gilfoyle, M. Evaluating Institutional Readiness for PPI Through Strategic and Reflective Practice: An Example from Ireland. Poster PRP084, NAPCRG Annual Meeting, 2020.

  • Salvalaggio, G., Brown, C., Kosteniuk, B., Twan, S., Lofters, A., Hyshka, E., Mosaico, F., Green, L., Perri, M., Le Chalifoux, N., Cavett, T. Comparative Case Study of the COVID‑19 Response for Canadian Urban Underserved Patients Experiencing Care Transitions. Poster PRP054, NAPCRG Annual Meeting, 2020.

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