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Module Code - Title:

BM6032 - ADVANCED PARTICIPATORY HEALTH RESEARCH

Year Last Offered:

2025/6

Hours Per Week:

Lecture

0

Lab

3

Tutorial

0

Other

2

Private

5

Credits

6

Grading Type:

N

Prerequisite Modules:

Rationale and Purpose of the Module:

High quality public and patient involvement (PPI) is about active and meaningful engagement with members of the public in health research. The rich tradition of participatory health research (PHR) offers a wealth of literature and resources that promote active and meaningful PPI. This advanced module provides in-depth exploration of PHR concepts and the theories and evidence that support them. Students will also gain exposure to the application of PHR in various settings and with a variety of different stakeholders, such as in community, with marginalised populations, with Travellers, Indigenous peoples, with youth; as well as in a variety of more clinical or institutional settings. This module will be most useful to students who are enrolled in MSc or PhD degrees in health who have PPI as a core element. Participatory Health Research (PHR) is an approach to conducting research where researchers are in partnership with the intended users or beneficiaries of the research - which may be patients, health professionals, organizations, policy makers, community members or entire communities. The Royal Society of Canada has defined participatory research as systematic investigation, with the collaboration of those affected by the issue being studied, for purposes of education and taking action or effecting social change. The equally important goals of participatory research are to answer important health questions of direct value to the research partners, while developing evidence that is applicable to other settings. Furthermore, participatory research integrates knowledge translation (KT) by involving those who need to act on the results as full partners throughout the process.

Syllabus:

Content: Class 1: 1. Introductions and course overview 2. PHR Overview Class 2: 1. Values and Drivers of PR 2. Defining your PHR Project a. What are your interests? What is feasible? I. Worksheet 1, part 1 Class 3: 1. PHR and Integrated Knowledge Translation Research a. Making research relevant b. Community and end-user impact 2. Identifying practical needs and goals a. Roleplay: defining outcomes from various stakeholder perspectives Class 4: 1. Fostering stakeholder Ownership over the Research Process a. Strategies for Maintaining Partner Engagement I. Worksheet 1, part 2 Class 5: 1. Intercultural Safety a. Identifying the needs of all partners I. Roleplay: Protecting community interests Class 6: 2. Working with Community-based service organisations 3. Assuring meaningful involvement of vulnerable or affected groups a. Lessons from HIV/AIDS research I. Worksheet 1, part 3 Class 7: 1. CBPR: Community-Based Participatory Research a. Community partners' perspectives b. Academic partners' perspectives Class 8: 1. The foundations of KT - identifying the implementation gap 2. PHR and Integrated KT Class 9: 1. PHR with Clinical Organisations a. Clinicians' perspectives b. Academic partners' perspectives Class 10: 3. Doing PHR as a Graduate Student Class 11: 1. Knowledge Co-Production and Youth Empowerment a. Worksheet or Roleplay Class 12: 1. Ethics in Partnered Research a. Partner support (letters, etc.) b. Protection of collectivities c. Community data ownership 2. Student Dilemmas with the Ethics Process a. Small Group Discussions: I. What systemic change is needed in the ethics process to accommodate new realities?

Learning Outcomes:

Cognitive (Knowledge, Understanding, Application, Analysis, Evaluation, Synthesis)

Learning Outcomes: Upon completion of this course, the participants should be able to: • Identify and engage research partners in both community and clinical settings • Design their own participatory research project • Identify participatory approaches appropriate to different partners, settings or contexts • Write the participatory research proposal • Understand the ethical dimensions particular to participatory health research

Affective (Attitudes and Values)

Students will • Gain confidence in working with non-academic research partners. • Gain confidence in allowing non-academic stakeholders to co-lead the research process • Competently overcome research partnership barriers • Confidently work in a number of community and clinical contexts

Psychomotor (Physical Skills)

N/A

How the Module will be Taught and what will be the Learning Experiences of the Students:

*This module will be offered subject to a minimum enrolment of 6 students • This module is developed and taught members of the GEMS PPI Research Group. • This course will briefly reiterate an overview of PR principles, then will allow students to define a real or imagined PR project and work through it over the semester. Instruction will include group discussions, small group work, role-play, and guest presenters from various PR projects. • The module involves a significant student discussion and self-directed co-learning (included in OTHER hours). Although the instructor monitors and participates in the discussion boards for each weekly topic, it is mostly up to the students to engage with each other and respond to each other's posts and questions. The instructor steps in only to add direction, resolve unanswered questions or provide additional insight where needed. • Throughout the module, students present their own research project ideas to each other and receive comment and feedback from their peers. This is done in a structured way that follows the weekly content of the modules. i.e., they discuss that part of their process that is being taught in that given week. • Student project proposals will culminate in a 10 page research proposal, paying particular attention to who their partners will be, how they will engage with them and how this will benefit both the research process and the partners' action needs. • Evaluation is via a mix of online quizzes, participation in discussions, presentation of work.

Research Findings Incorporated in to the Syllabus (If Relevant):

Prime Texts:

Macaulay, A. C., Commanda, L. E., Freeman, W. L., Gibson, N., McCabe, M. L., Robbins, C. M., & Twohig, P. L. (1999) Participatory research maximises community and lay involvement , British Medical Journal, 319(7212), 774-778. (expanded version available at http://www.napcrg.org/resources-responsible.cfm)
Wallerstein, N., & Duran, B. (2008) The theoretical, historical, and practical roots of CBPR , In N. Wallerstein & M. Minkler (Eds.), Community-Based Participatory Research for Health: From Process to Outcomes (pp. 25-46). San Francisco, CA: Jossey-Bass.
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. doi: 10.1146/annurev.publhealth.19.1.173
Cargo, M., & Mercer, S. L. (2008) The Value and Challenges of Participatory Research: Strengthening Its Practice , Annual Review of Public Health, 29(1), 325-350. doi: 10.1146/annurev.publhealth.29.091307.083824
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. (2012) Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice , Milbank Quarterly, 90(2)
Green, L. W. (2008) Making research relevant: if it is an evidence-based practice, where's the practice-based evidence? , Family Practice. doi: 10.1093/fampra/cmn055
Glasgow, R. (2008) What types of evidence are needed to advance behavioral medicine? , Ann Behav Med. 35:19-25.
Salsberg J, Parry D, Pluye P, Macridis S, Herbert S, and Macaulay AC. (2015) Successful Strategies to Engage Research Partners for Translating Evidence into Action in Community Health: A Critical Review , Journal of Environmental and Public Health
Mercer, S. L., Green, L. W., Cargo, M., Potter, M. A., Daniel, M., Scott Olds, R., & Reed-Gross, E. (2008) Appendix C: Reliability-tested guidelines for assessing PR projects. , In M. Minkler & N. Wallerstein (Eds.), Community-Based Participatory Research for Health: from practice to outcomes, 2nd edition. San Francisco: Jossey-Bass
Minkler, M. (2004) Ethical Challenges for the "Outside" Researcher in Community-Based Participatory Research , Health Education & Behavior, 31(6), 684-697. doi: 10.1177/1090198104269566
Kennedy, C., Vogel, A., Goldberg-Freeman, C., Kass, N., & Farfel, M. (2009) Faculty Perspectives on Community-Based Research: "I See This Still as a Journey" , Journal of Empirical Research on Human Research Ethics: An International Journal, 4(2), 3-16. http://doi.org/10.1525/jer.2009.4.2.3
Tse AM, Palakiko DM, Daniggelis E, Makahi E (2015) Facilitating Community Participants' Research Engagement: Community Members' Perceptions of Community-based Research , Int J Nurs Clin Pract 2: 142. doi: http://dx.doi.org/10.15344/2394-4978/2015/142
Guta, A., Strike, C., Flicker, S., Murray, S. J., Upshur, R., & Myers, T. (2014) Governing through community-based research: Lessons from the Canadian HIV research sector , Soc Sci & Med, 123, 250-261
Greene, S., Ahluwalia, A., Watson, J., Tucker, R., Rourke, S. (2009) Between skepticism and empowerment: the experiences of peer research assistants in HIV/AIDS, housing and homelessness community-based research , International Journal of Social Research Methodology, 12(4): 361-373
O'Reilly-de Brún, M., de Brún, T., Okonkwo, E., Bonsenge-Bokanga, J.-S., De Almeida Silva, M.M., Ogbebor, F., Mierzejewska, A., Nnadi, L., van Weel-Baumgarten, E., van Weel, C., van den Muijsenbergh, M. and MacFarlane, A. (2016) Using Participatory Learning & Action research to access and engage with 'hard to reach' migrants in primary healthcare research , BMC Health Services Research, 16(1), 25, available: http://dx.doi.org/10.1186/s12913-015-1247-8
Macaulay, A. C., Cargo, M., Bisset, S., Delormier, T., Lévesque, L., Potvin, L., & McComber, A. M. (2006) Community empowerment for the Primary Prevention of Type 11 diabetes: Kanien'kehá:ka (Mohawk) ways for the Kahnawake Schools Diabetes Prevention Project , In M. Ferreira & G. Lang (Eds.), Indigenous Peoples and Diabetes: Community Empowerment and Wellness. (pp. 407--458). Durham, NC:: Carolina Academic Press
Salsberg J; Macridis S; Garcia Bengoechea E; Macaulay AC; Moore S. (2017) The Shifting Dynamics of Social Roles and Project Ownership over the Lifecycle of a Community-Based Participatory Research Project , Family Practice (2017) 34 (3): 305-312
Salsberg J; Macridis S; Garcia Bengoechea E; Macaulay AC; Moore S. (2017) Engagement Strategies that Foster Community Self-Determination in Participatory Research: Insider Ownership Through Outsider Championship , Family Practice (2017) 34 (3): 336-340
Straus SE, Tetroe J, Graham ID. (2013) Section 1 (pp 3-26) , Knowledge translation in health care: moving from evidence to practice. 2nd ed. Chichester, UK; Hoboken, NJ: Wiley-Blackwell/BMJ Books
Gillian Bartlett, Vaso Rahimzadeh, Cristina Longo, Lori A Orlando, Martin Dawes, Jean Lachaine, Murielle Bochud, Fred Paccaud, Howard Bergman, Laura Crimi & Amalia M Issa (2014) The future of genomic testing in primary care: the changing face of personalized medicine. , Personalized Medicine, 11(5), 477-486
Malus M, Shulha M, Granikov V, Johnson-Lafleur J, d'Souza V, Knot M, Holcroft C, Hung K, Periera I, Riccuto C, Salsberg J, Macaulay AC. (2011) A Participatory Approach to Understanding and Measuring Patient Satisfaction in a Primary Care Teaching Setting , Progress in Community Health Partnerships: Research, Education and Action, Volume 5, Issue 4, Winter 2011. pp. 417-424.
Bush, P. (2013) Chapters 4 & 7 from Building on a YMCA's health and physical activity promotion capacities: a case study of a researcher-organization partnership to optimize adolescent programming , Department of Kinesiology and Physical Education, McGill University, http://mcgill.worldcat.org/title/building-on-a-ymcas-health-and-physical-activity-promption-capacities-a-case-study-of-a-researcher-organization-partnership-to-optimize-adolescent-programming/oclc/889661618&referer=brief_results
Tuck, E., Allen, J., Bacha, M., Morales, A., Quinter, S., Thompson, J., & Tuck, M. (2008) PAR praxes for now and future change: The collective of researchers on educational disappointment and desire , In J. Cammarota & M. Fine (Eds.) Revolutionizing education: Youth participatory action research in motion (pp. 49-83) New York: Routledge
Switzer, S, Lyrauu, T., Apong, K., Bell, O, Manual Smith, C, Hernandez, L., Pariah, S., McWhinney, P.G., Seidu, F., Bykes, A. (2017) What's glitter got to do with it? Re-imagining harm reduction, decision-making and the politics of youth engagement , In Smith, C. & Marshall, Z (eds.) Critical Perspectives on Harm Reduction: Conflict, Institutionalization, Co-optation, Depoliticization, and Direct Action, Nova Publishers: New York
Goodyear-Smith, F. et al. (2015) Co-design and implementation research: challenges and solutions for ethics committees , BMC Medical Ethics, 16:78
Weijer, C., & Emanuel, E. J. (2000) Protecting Communities in Biomedical Research , Science, 289(5482), 1142-1144. doi: 10.1126/science.289.5482.1142
PRE-Government of Canada (2014) Chapters 9 and 10 from TCPS2-2014: Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, 2nd Edition , Government of Canada http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/Default/

Other Relevant Texts:

Minkler, M., & Wallerstein, N. (2008) Introduction to Community-Based Participatory Research: New issues and emphases , In M. Minkler & N. Wallerstein (Eds.), Community-Based Participatory Research for Health: From Process to Outcomes (2nd ed., pp. 5-23), San Francisco: CA: Jossey-Bass
Lewin, K. (1946) Action research and minority problems , Journal of Social Issues, 2, 34-46
Jones, L., & Wells, K. (2007) Strategies for Academic and Clinician Engagement in Community-Participatory Partnered Research. , Journal of the American Medical Association, 297(4), 407-410. doi: 10.1001/jama.297.4.407
Salsberg J, Macaulay AC, Parry D. (2014) Guide to Integrated Knowledge Translation Research , In, Ian D. Graham, Jacqueline M. Tetroe, and Alan Pearson, Eds. Turning Knowledge into Action: Practical Guidance on How to Do Integrated Knowledge Translation Research, Book 21 in the Synthesis Science in Healthcare book series. Wolters Kluwer-Joanna Briggs Institute
Kahnawake Schools Diabetes Prevention project (2007) Code of Research Ethics , Available from http://www.ksdpp.org/elder/code_ethics.php
The First Nations Information Governance Centre (2015) OCAP principles , available at http://www.naho.ca/documents/fnc/english/FNC_OCAPInformationResource.pdf

Programme(s) in which this Module is Offered:

PHDEDNRFA - Structured PhD in Education

Semester(s) Module is Offered:

Spring

Module Leader:

jon.salsberg@ul.ie