Abstracts
Abstract
In this post-workshop summary, we describe three ethical challenges related to engaging people with lived experience as partners in health research. We share learnings and reflective prompts from our workshop delivered as part of the Canadian Bioethics Society Workshop and Community Forum held in May 2023.
Keywords:
- community engagement,
- patient engagement,
- lived experience,
- health research,
- power,
- ethics
Résumé
Dans ce résumé post-atelier, nous décrivons trois défis éthiques liés à l’engagement des personnes ayant une expérience vécue en tant que partenaires dans la recherche en santé. Nous partageons les enseignements et les pistes de réflexion tirés de l’atelier organisé dans le cadre de l’atelier et du forum communautaire de la Société canadienne de bioéthique, qui s’est tenu en mai 2023.
Mots-clés :
- engagement communautaire,
- engagement des patients,
- expérience vécue,
- recherche en santé,
- pouvoir,
- éthique
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Appendices
Bibliography
- 1. Manafo E, Petermann L, Mason-Lai P, Vandall-Walker V. Patient engagement in Canada: A scoping review of the “how” and “what” of patient engagement in health research. Health Research Policy and Systems. 2018;16:5.
- 2. Brett J, Staniszewska S, Mockford C, et al. Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations. 2014;17(5):637-50.
- 3. Browne J, Dorris ER. What can we learn from a human-rights based approach to disability for public and patient involvement in research. Frontiers in Rehabilitation Sciences. 2022;3:878231.
- 4. Sheikhan NY, Kuluski K, McKee S, Hiebert M, Hawke LD. Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis. Health Expectations. 2023;26(5):1806-19.
- 5. Hawke LD, Sheikhan NY, Rockburne F. Lived experience engagement in mental health research: Recommendations for a terminology shift. Health Expectations. 2023;26(4):1381-3.
- 6. Daya I, Hamilton B, Roper C. Authentic engagement: A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice. International Journal of Mental Health Nursing. 2020;29(2):299-311.
- 7. Majid U. The dimensions of tokenism in patient and family engagement: a concept analysis of the literature. Journal of Patient Experience. 2020;7(6):1610-20.
- 8. Zimmerman EB, Concannon TW. Introduction. In: Zimmerman EB, editor. Researching Health Together. SAGE Publications, Inc; 2020. p. 1-22.
- 9. Brooks ES, Mavroudis CL, Tong J, Wirtalla CJ, Friedman A, Kelz RR. Health system structure: an opportunity to address structural racism and discrimination. Annals of Surgery. 2023;277(5):854-8.
- 10. Paradies YC. Defining, conceptualizing and characterizing racism in health research. Critical Public Health. 2006;16(2):143-57.
- 11. Sayani A, Maybee A, Manthorne J, et al. Equity-mobilizing partnerships in community (EMPaCT): co-designing patient engagement to promote health equity. Healthcare Quarterly. 2022;24(SP):86-92.
- 12. Alessi EJ, Kahn S. Toward a trauma-informed qualitative research approach: guidelines for ensuring the safety and promoting the resilience of research participants. Qualitative Research in Psychology. 2023;20(1):121-54.
- 13. Plamondon KM, Bisung E. The CCGHR Principles for Global Health Research: centering equity in research, knowledge translation, and practice. Social Science & Medicine. 2019;239:112530.
- 14. Sayani A, Maybee A, Manthorne J, et al. Building equitable patient partnerships during the COVID-19 pandemic: challenges and key considerations for research and policy. Healthcare Policy. 2021;17(1):17-24.