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Participatory Health Research in North America: From Community Engagement to Evidence-Informed Practice

  • Jon Salsberg
  • Nickoo Merati
Chapter

Abstract

Participatory research is the systematic co-creation of new knowledge by researchers working in equitable partnerships with those affected by the issue under study or those who will benefit from or ultimately act on its results. In the North American context, participatory research, in general and particularly in health, has evolved as an approach to research ownership and co-governance, rather than a methodology or set of research methods. This reflects the contexts, settings, and partners that have valued and applied this approach over the past four decades to address community, clinical service, and policy needs. In this chapter, we will explore the foundations of participatory health research in North America, identifying the rationale for the shift from methodology to approach and then focusing on its emergence in the pre-health promotion era, its ascendency in driving community-based research, its move from health promotion to health practice, and its role in knowledge translation and the critique of evidence-based practice. From this perspective, we will conclude with a discussion of the current gaps in our understanding of participatory health research and directions for further study.

Keywords

Participatory health research Knowledge co-production Participatory research Evidence-based practice Health services research Public and patient involvement Health promotion Knowledge translation 

References

  1. Argyris, C., & Schön, D. A. (1978). Organizational learning. Reading: Addison-Wesley.Google Scholar
  2. Argyris, C., Putnam, R., & Smith, D. M. (1985). Action science. San Francisco: Jossey-Bass.Google Scholar
  3. Armstrong, R., Waters, E., Roberts, H., Oliver, S., & Popay, J. (2006). The role and theoretical evolution of knowledge translation and exchange in public health. Journal of Public Health, 28(4), 384–389.CrossRefPubMedCentralGoogle Scholar
  4. Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35(4), 216–224.CrossRefGoogle Scholar
  5. Bowen, S., & Graham, I. D. (2013). Integrated knowledge translation. In E. Straus, J. Tetroe, & I. D. Graham (Eds.), Knowledge Translation in Healthcare: Moving from Evidence to Practice (pp. 14–23). Oxford: Wiley/BMJ Books.CrossRefGoogle Scholar
  6. Bradbury, H., & Reason, P. (2008). Issues and choice points for improving the quality of action research. In M. Minkler & N. Wallerstein (Eds.), Community based participatory research for health (2nd ed., pp. 225–242). San Francisco: Jossey-Bass.Google Scholar
  7. Cacari-Stone, L., Wallerstein, N., Garcia, A. P., & Minkler, M. (2014). The promise of community-based participatory research for health equity: A conceptual model for bridging evidence with policy (research support, non-U.S. gov’t). American Journal of Public Health, 104(9), 1615–1623.  https://doi.org/10.2105/AJPH.2014.301961.CrossRefPubMedPubMedCentralGoogle Scholar
  8. Cargo, M., & Mercer, S. L. (2008). The value and challenges of participatory research: Strengthening its practice. Annual Review of Public Health, 29, 325–350.  https://doi.org/10.1146/annurev.publhealth.29.091307.083824.CrossRefPubMedPubMedCentralGoogle Scholar
  9. Cargo, M., Delormier, T., Levesque, L., Horn-Miller, K., McComber, A., & Macaulay, A. C. (2008). Can the democratic ideal of participatory research be achieved? An inside look at an academic indigenous community partnership. Health Education Research, 23, 904–914 doi:cym077 [pii] 91093/her/cym077.CrossRefPubMedCentralGoogle Scholar
  10. Cargo, M., Delormier, T., Levesque, L., McComber, A., & Macaulay, A. (2011). Community capacity as an “inside job”: Evolution of perceived ownership of a university-aboriginal community partnership. American Journal of Health Promotion, 26(2), 96–100 http://ajhpcontents.org/toc/hepr/26/2.CrossRefPubMedCentralGoogle Scholar
  11. Chavez, V., Duran, B., Baker, Q. E., Avila, M. M., & Wallerstein, N. (2008). The dance of race and privilege in CBPR. In Minkler, M., & Wallerstein, N. (Eds.), Community-based participatory research for health: From process to outcomes. San Francisco: Jossey-Bass.Google Scholar
  12. Davies, H. T., Nutley, S. M., & Smith, P. C. (2000). What works?: Evidence-based policy and practice in public services. Boston: MIT Press.Google Scholar
  13. Denzin, N. K., Lincoln, Y. S., & Smith, L. T. (2008). Handbook of critical and indigenous methodologies. Los Angeles: Sage.CrossRefGoogle Scholar
  14. Duran, E., & Duran, B. (1995). Native American postcolonial psychology. Albany: SUNY Press.Google Scholar
  15. Epp, J. (1986). Achieving health for all: A framework for health promotion. Health Promotion, 1(4), 419–428.CrossRefPubMedCentralGoogle Scholar
  16. Fine, M., Tuck, E., & Zeller-Berkman, S. (2008). Do you believe in Geneva? In Denzin, N. K., Lincoln, Y. S. & Smith, L. T. (Eds), Handbook of critical and indigenous methodologies. Thousand Oaks, CA: SAGE Publications Ltd. https://doi.org/10.4135/9781483385686CrossRefGoogle Scholar
  17. Freire, P. (1970). Pedagogy of the oppressed. New York: Herder and Herder.Google Scholar
  18. Gagliardi, A. R., Kothari, A., & Graham, I. D. (2017). Research agenda for integrated knowledge translation (IKT) in healthcare: What we know and do not yet know (editorial). Journal of Epidemiology and Community Health, 71(2), 105–106.  https://doi.org/10.1136/jech-2016-207743.CrossRefPubMedPubMedCentralGoogle Scholar
  19. Gaventa, J., & Cornwall, A. (2006). Challenging the boundaries of the possible: Participation, knowledge and power. IDS Bulletin, 37(6), 122–128.CrossRefGoogle Scholar
  20. Glasgow, R. E., Vogt, T. M., & Boles, S. M. (1999). Evaluating the public health impact of health promotion interventions: The RE-AIM framework. American Journal of Public Health, 89(9), 1322–1327.CrossRefPubMedCentralGoogle Scholar
  21. Graham, I. D., & Tetroe, J. (2007). How to translate health research knowledge into effective healthcare action. Healthcare Quarterly, 10(3), 20–22 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=17632905.CrossRefPubMedCentralGoogle Scholar
  22. Graham, I. D., Harrison, M. B., Brouwers, M., Davies, B. L., & Dunn, S. (2002). Facilitating the use of evidence in practice: Evaluating and adapting clinical practice guidelines for local use by health care organizations. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 31(5), 599–611 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12353740.CrossRefPubMedCentralGoogle Scholar
  23. Graham, I. D., Logan, J., Harrison, M. B., Straus, S. E., Tetroe, J., Caswell, W., et al. (2006). Lost in knowledge translation: Time for a map? The Journal of Continuing Education in the Health Professions, 26(1), 13–24. https://doi.org/10.1002/chp.47.CrossRefPubMedCentralGoogle Scholar
  24. Green, L. W. (2008). Making research relevant: If it is an evidence-based practice, where’s the practice-based evidence? Family Practice, 25(Suppl 1), i20–i24 doi:cmn055 [pii] 271093/fampra/cmn055.CrossRefGoogle Scholar
  25. Green, L. W., & Glasgow, R. E. (2006). Evaluating the relevance, generalization, and applicability of research issues in external validation and translation methodology. Evaluation & the Health Professions, 29(1), 126–153.CrossRefGoogle Scholar
  26. Green, L. W., & Kreuter, M. W. (2005). Health program planning : An educational and ecological approach. New York: McGraw-Hill.Google Scholar
  27. Green, L. W., George, A., Daniel, M., Frankish, C. J., Herbert, C. P., Bowie, W. R., et al. (1995). Study of participatory research in health promotion: Review and recommendations for the development of participatory research in health promotion in Canada. Ottawa: Royal Society of Canada.Google Scholar
  28. Green, L., Ottoson, J., García, C., & Robert, H. (2009). Diffusion theory and knowledge dissemination, utilization, and integration in public health. Annual Review of Public Health, 30, 151.CrossRefPubMedCentralGoogle Scholar
  29. Greenhalgh, T. (2012). Why do we always end up here? Evidence-based medicine’s conceptual cul-de-sacs and some off-road alternative routes. Journal of Primary Health Care, 4(2), 92–97 http://www.ncbi.nlm.nih.gov/pubmed/22675691.PubMedPubMedCentralGoogle Scholar
  30. Greenhalgh, T., Robert, G., Macfarlane, F., Bate, P., & Kyriakidou, O. (2004). Diffusion of innovations in service organizations: Systematic review and recommendations. The Milbank Quarterly, 82(4), 581–629.  https://doi.org/10.1111/j.0887-378X.2004.00325.x.CrossRefPubMedPubMedCentralGoogle Scholar
  31. Israel, B. A. (2005). Methods in community-based participatory research for health. San Francisco: Jossey-Bass.Google Scholar
  32. Israel, B. A., Schulz, A. J., Parker, E. A., & Becker, A. B. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202.CrossRefGoogle Scholar
  33. Israel, B. A., Parker, E. A., Rowe, Z., Salvatore, A., Minkler, M., Lopez, J., et al. (2005). Community-based participatory research: Lessons learned from the centers for children’s environmental health and disease prevention research. Environmental Health Perspectives, 113(10), 1463–1471 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16203263.CrossRefPubMedCentralGoogle Scholar
  34. Jagosh, J., Pluye, P., Macaulay, A. C., Salsberg, J., Henderson, J., Sirett, E., et al. (2011). Assessing the outcomes of participatory research: Protocol for identifying, selecting, appraising and synthesizing the literature for realist review. Implementation Science, 6, 24 doi:1748-5908-6-24 [pii] 10.1186/1748-5908-6-24.CrossRefPubMedCentralGoogle Scholar
  35. Jagosh, J., Macaulay, A. C., Pluye, P., Salsberg, J., Bush, P. L., Henderson, J., et al. (2012). Uncovering the benefits of participatory research: Implications of a realist review for health research and practice. The Milbank Quarterly, 90(2), 311–346.  https://doi.org/10.1111/j.1468-0009.2012.00665.x.CrossRefPubMedPubMedCentralGoogle Scholar
  36. Kirby, S. L., Greaves, L., & Reid, C. (2006). Experience research social change: Methods beyond the mainstream. Toronto: University of Toronto Press.Google Scholar
  37. Kohatsu, N. D., Robinson, J. G., & Torner, J. C. (2004). Evidence-based public health: An evolving concept. American Journal of Preventive Medicine, 27(5), 417–421.Google Scholar
  38. Kothari, A., McCutcheon, C., & Graham, I. D. (2017). Defining integrated knowledge translation and moving forward: A response to recent commentaries. International Jouranl of Health Policy Management, 6(5), 299–300.  https://doi.org/10.15171/ijhpm.2017.15.CrossRefGoogle Scholar
  39. Labonte, R. (1986). Social inequality and healthy public policy. Health Promotion, 1(3), 341–351.CrossRefPubMedCentralGoogle Scholar
  40. Lewin, K., & Lewin, G. W. (1948). Resolving social conflicts, selected papers on group dynamics [1935–1946]. New York: Harper.Google Scholar
  41. Macaulay, A., Paradis, G., Potvin, L., Cross, E., Saad-Haddad, C., McComber, A., et al. (1998). Primary prevention of diabetes type II in first nations: Experiences of the Kahnawake Schools Diabetes Prevention Project. Canadian Journal of Diabetes Care, 22, 44–49 Link unavailable.Google Scholar
  42. Macaulay, A. C., Commanda, L. E., Freeman, W. L., Gibson, N., McCabe, M. L., Robbins, C. M., et al. (1999). Participatory research maximises community and lay involvement. North American Primary Care Research Group. BMJ, 319(7212), 774–778 http://www.bmj.com/cgi/reprint/319/7212/774?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=Participatory+research+maximises+community&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT.CrossRefPubMedCentralGoogle Scholar
  43. Macaulay, A. C., Jagosh, J., Seller, R., Henderson, J., Cargo, M., Greenhalgh, T., et al. (2011). Assessing the benefits of participatory research: A rationale for a realist review. Global Health Promotion, 18(2), 45–48 http://www.ncbi.nlm.nih.gov/pubmed/21744664.CrossRefPubMedCentralGoogle Scholar
  44. McIntyre, A. (2008). Participatory action research. Los Angeles: Sage Publications.Google Scholar
  45. McLean, R. K., Tucker, J., Graham, I., Macleod, M., Tetroe, J., Manuel, C., et al. (2013). Evaluation of CIHR’s knowledge translation funding program. Ottawa: Canadian Institutes of Health Research.Google Scholar
  46. Minkler, M. (2000). Using participatory action research to build healthy communities. Public Health Reports, 115(2–3), 191–197.CrossRefPubMedCentralGoogle Scholar
  47. Minkler, M., & Baden, A. C. (2008). Impacts of CBPR on academic researchers, research quality and methodology, and power relations. In M. Minkler & N. Wallerstein (Eds.), Community-based participatory research for health: From process to outcomes (2nd ed., pp. 243–262). San Francisco: Jossey-Bass.Google Scholar
  48. Minkler, M., & Wallerstein, N. (2008a). Community-based participatory research for health: From process to outcomes. San Francisco: Jossey-Bass.Google Scholar
  49. Minkler, M., & Wallerstein, N. (Eds.). (2008b). Community-based participatory research for health: From process to outcome (2nd ed.). San Francisco: Jossey-Bass.Google Scholar
  50. National Institutes of Health. (2012). NIH Roadmap for Medical Research. US Department of Health and Human Services. URL: https://pubs.niaaa.nih.gov/publications/arh311/12-13.pdf. Accessed: 18 May, 2018.
  51. Nichter, M. (1984). Project community diagnosis: Participatory research as a first step toward community involvement in primary health care (research support, non-U.S. gov’t). Social Science & Medicine, 19(3), 237–252 http://www.ncbi.nlm.nih.gov/pubmed/6484613.CrossRefGoogle Scholar
  52. O’Fallon, L. R., & Dearry, A. (2002). Community-based participatory research as a tool to advance environmental health sciences. Environmental Health Perspectives, 110(Suppl 2), 155–159 doi:sc271_5_1835 [pii].CrossRefPubMedCentralGoogle Scholar
  53. Oetzel, J. G., Zhou, C., Duran, B., Pearson, C., Magarati, M., Lucero, J., et al. (2014). Establishing the psychometric properties of constructs in a community-based participatory research conceptual model. American Journal of Health Promotion: AJHP.  https://doi.org/10.4278/ajhp.130731-QUAN-398.CrossRefPubMedCentralGoogle Scholar
  54. Parry, D., Salsberg, J., & Macaulay, A. C. (2009). A guide to researcher and knowledge-user collaboration in health research. Ottawa: Canadian Institutes of Health Research Available at: http://www.cihr-irsc.gc.ca/e/44954.html. Accessed: 1 Oct 2009).Google Scholar
  55. Patton, M. (1990). Qualitative evaluation and research methods. Newbury Park: Sage Publications.Google Scholar
  56. Pawson, R. (2006). Evidence-based policy: A realist perspective. London: Sage.CrossRefGoogle Scholar
  57. Rahman, A. (1993). People’s self-development: Perspectives on participatory action research – a journey through experience. Dhaka: Zed Books.Google Scholar
  58. Robertson, A., & Minkler, M. (1994). New health promotion movement: A critical examination. Health Education Quarterly, 21(3), 295–312 http://www.ncbi.nlm.nih.gov/pubmed/8002355.CrossRefPubMedCentralGoogle Scholar
  59. Sackett, D. L. (2000). Evidence-based medicine. Wiley Online Library.Google Scholar
  60. Sackett DL, Rosenberg WMC, Gray JAM, Haynes RB, Richardson W. (1996). Evidence based medicine: what it is and what it isn’t BMJ 1996; 312 :71.Google Scholar
  61. Salsberg, J., & Macaulay, A. (2013). Linkage and exchange interventions. In S. E. Straus, J. Tetroe, & I. D. Graham (Eds.), Knowledge translation in health care: Moving from evidence to practice (pp. 176–182). Oxford: Wiley-Blackwell/BMJ Books.CrossRefGoogle Scholar
  62. Salsberg, J., Macaulay, A. C., & Parry, D. (2014). Guide to integrated knowledge translation research. In I. D. Graham, J. Tetroe, & A. Pearson (Eds.), Turning knowledge into action: Practical guidance on how to do integrated knowledge translation research (pp. 176–182). Adelaide: Wolters Kluwer-Lippincott-JBI.Google Scholar
  63. Salsberg, J., Macridis, S., Garcia Bengoechea, E., Macaulay, A. C., Moore, S., & Committee, K. S. T. P. (2017a). Engagement strategies that foster community self-determination in participatory research: Insider ownership through outsider championship. Family Practice, 34, 336–340.  https://doi.org/10.1093/fampra/cmx001.CrossRefPubMedPubMedCentralGoogle Scholar
  64. Salsberg, J., Macridis, S., Garcia Bengoechea, E., Macaulay, A. C., Moore, S., & Committee, K. S. T. P. (2017b). The shifting dynamics of social roles and project ownership over lifecycle of a community-based participatory research project. Family Practice, 34, 305–312.  https://doi.org/10.1093/fampra/cmx006.CrossRefPubMedPubMedCentralGoogle Scholar
  65. Sanchez, V., Carrillo, C., & Wallerstein, N. (2011). From the ground up: Building a participatory evaluation model. Progress in Community Health Partnerships, 5(1), 45–52.  https://doi.org/10.1353/cpr.2011.0007.CrossRefPubMedPubMedCentralGoogle Scholar
  66. Schwandt, T. A. (2007). The SAGE dictionary of qualitative inquiry. Los Angeles: Sage Publications.CrossRefGoogle Scholar
  67. Semali, L., & Kincheloe, J. L. (1999). What is indigenous knowledge?: Voices from the academy. London: Taylor & Francis.Google Scholar
  68. Straus, S. E., Tetroe, J., & Graham, I. (2009). Defining knowledge translation (review). Canadian Medical Association Journal, 181(3–4), 165–168.  https://doi.org/10.1503/cmaj.081229.CrossRefPubMedPubMedCentralGoogle Scholar
  69. Straus, S. E., Tetroe, J. M., & Graham, I. D. (2011). Knowledge translation is the use of knowledge in health care decision making (review). Journal of Clinical Epidemiology, 64(1), 6–10.  https://doi.org/10.1016/j.jclinepi.2009.08.016.CrossRefPubMedPubMedCentralGoogle Scholar
  70. Wallerstein, N., & Duran, B. (2008). The theoretical, historical, and practical roots of CBPR. In M. Minkler & N. Wallerstein (Eds.), Community-based participatory research for health: From process to outcomes. San Francisco: Jossey-Bass.Google Scholar
  71. Ward, V., House, A., & Hamer, S. (2009). Developing a framework for transferring knowledge into action: A thematic analysis of the literature. Journal of Health Services Research & Policy, 14(3), 156–164.CrossRefGoogle Scholar
  72. Weingarten, S., Garb, C. T., Blumenthal, D., Boren, S. A., & Brown, G. D. (2000). Improving preventive care by prompting physicians. Archives of Internal Medicine, 160, 301–308.CrossRefPubMedCentralGoogle Scholar
  73. WHO. (1986). Ottawa charter of health promotion. Canadian Journal of Public Health. Revue Canadienne de Sante Publique, 139, 425–430.Google Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Graduate Entry Medical School and Health Research Institute (HRI)University of LimerickLimerickIreland
  2. 2.Department of Family MedicineMcGill UniversityMontrealCanada

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