Stage 1: Getting Started: Including Patients and Other Stakeholders
The Canadian Institutes of Health Research (CIHR) introduced the Strategy for Patient Oriented Research (SPOR) in 2011. The aim is to encourage patient engagement in all aspects of healthcare research.
"Patient-oriented research is about engaging patients, their caregivers, and families as partners in the research process. This engagement helps to ensure that studies focus on patient-identified priorities, which ultimately leads to better patient outcomes." https://cihr-irsc.gc.ca/e/41204.html
Patient Partners can engage in a wide variety of research projects, including systematic reviews and other rigorous synthesis review methods. A concern with POR is that Patient Partner engagement might be "tokenistic”. In this section, we provide resources on how Patient Partners might be engaged in the review process, and how to involve Patient Partners in a meaningful way.
The following is a recording of an Alberta SPOR PE Journal Club discussing a paper entitled "Patient partners’ perspectives of meaningful engagement in synthesis reviews: A patient‐oriented rapid review", presented by three of the authors - Catherine Boden, Anne Marie Edmonds and Tom Porter in May 2022.
To get help on working with Patient Partners if you are conducting your POR review in Saskatchewan - https://www.scpor.ca/working-with-patients
Additional Resources
Definitions, Checklists, Frameworks
Black, A., Strain, K., Wallsworth, C., Charlton, S. G., Chang, W., McNamee, K., & Hamilton, C. (2018). What constitutes meaningful engagement for patients and families as partners on research teams?. Journal of Health Services Research & Policy, 23(3), 158-167.- Hamilton, C. B., Hoens, A. M., Backman, C. L., McKinnon, A. M., McQuitty, S., English, K., & Li, L. C. (2018). An empirically based conceptual framework for fostering meaningful patient engagement in research. Health Expectations, 21(1), 396-406.
- Hoddinott, P, Pollock, A, O'Cathain, A, et al. How to incorporate patient and public perspectives into the design and conduct of research. F1000Res 2018; 7: 752.
- The Patient-Oriented Research (POR) Checklist. Evidence-Informed Practices and Strategies for Patient-Oriented Research (POR): A ‘Menu’ for Research Teams. British Columbia Academic Health Science Network.
- SCPOR Patient-Oriented Research Level of Engagement Tool (PORLET)
- SCPOR Indigenous Research Level of Engagement Tool (IRLET)
Articles Specific to Patient Engagement in Synthesis Reviews
- Bayliss, K., Starling, B., Raza, K. et al. Patient involvement in a qualitative meta-synthesis: lessons learnt. Research Involvement and Engagement, 2, 18 (2016).
- Boden, C., Edmonds, A. M., Porter, T., Bath, B., Dunn, K., Gerrard, A., Goodridge, D. & Stobart, C. (2021). Patient partners’ perspectives of meaningful engagement in synthesis reviews: A patient‐oriented rapid review. Health Expectations. 24 (4), 1056-1071.
- Pollock, A., Campbell, P., Struthers, C., Synnot, A., Nunn, J., Hill, S., ... & Morley, R. (2019). Development of the ACTIVE framework to describe stakeholder involvement in systematic reviews. Journal of health services research & policy, 24(4), 245-255. Freely available pre-print.
- Taylor, J.J., Rytwinski, T., Bennett, J.R. et al. Lessons for introducing stakeholders to environmental evidence synthesis. Environmental Evidence 6 (1), 26 (2017).
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