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- OPEN ACCESS
- Carole Lunny,
- Wasifa Zarin,
- Sabrina Chaudhry,
- Sonia M. Thomas,
- Annie LeBlanc,
- Sophie Desroches,
- Tanya Horsley,
- Heather Colquhoun,
- Priscille-Nice Sanon,
- Minnie Downey,
- Zahra Goodarzi,
- Nancy N. Baxter,
- Kelly English,
- Elliot PausJenssen,
- Shanon McQuitty,
- Linda Wilhelm,
- Annette McKinnon,
- Alison M. Hoens,
- Linda C. Li,
- Fiona Clement,
- Janet A. Curran,
- Ahmed M. Abou-Setta,
- Christina Godfrey,
- David Moher,
- Pertice Moffitt,
- Jennifer Walker,
- Janet Jull,
- Cheryl Koehn,
- Wanrudee Isaranuwatchai,
- Sharon E. Straus, and
- Andrea C. Tricco
The Strategy for Patient Oriented Research (SPOR) Evidence Alliance is a research initiative in Canada whose mission is to promote the synthesis, dissemination, and integration of research results into health care and public health decision-making and clinical practice. The aim of this paper is to (i) outline the governance and committee structure of the SPOR Evidence Alliance, (ii) outline the procedures for patient and health system decision-maker engagement, and (iii) present the capacity-building strategy for governance members. The governance structure includes the following six standing committees: the International Advisory Committee, Steering Committee, Executive Committee, Knowledge Translation Committee, Partnerships Committee, and Training and Capacity Development Committee. The guiding principles embrace inclusiveness, support, mutual respect, transparency, and co-building. There are currently 64 committee members across the six committees, 13 patient and public partners, 8 health system decision-makers, 7 research trainees, and 36 researchers. A multi-disciplinary and diverse group of people in Canada are represented from all regions and at various levels of training in knowledge generation, exchange, and translation. This collaborative model makes the SPOR Evidence Alliance strong and sustainable by leveraging the knowledge, lived experiences, expertise, skills, and networks among its 342 members and 12 principal investigators. - OPEN ACCESS
- Linda C. Li,
- Alison M. Hoens,
- Linda Wilhelm,
- Vikram Bubber,
- Elliot PausJenssen,
- Annette McKinnon,
- Jenny Leese,
- Thalia Otamendi,
- Clayon B. Hamilton,
- Wasifa Zarin,
- Andrea C. Tricco, and
- for the SPOR Evidence Alliance
The Evidence Alliance (EA) is a Canada-wide multi-stakeholder organization providing national-level support in knowledge synthesis, clinical practice guidelines development, and knowledge translation. With a mandate to deliver the best available evidence to inform health policy and improve patient care, the EA involves patients and their caregivers in its governance, research priority setting and conduct, and capacity building. To reflect on the experiences of patient involvement in its first three years, the organization conducted a self-study with 17 actively involved patient partners. They answered the Patient Engagement in Research Scale 22-item short form (PEIRS-22) and open-ended questions. Of the 15 respondents, 12 were women with a mean age of 62.6 years (SD 10.1). The mean PEIRS-22 score was 82.1 (SD 15.9), indicating perceived meaningful engagement. Analysis of the free-text answers identified three themes: (i) communication: successes, changes, and improvements; (ii) a respectful and welcoming environment; and (iii) opportunities to learn and contribute. Patient partners noted the EA made genuine efforts to welcome them and value their contributions. They also identified a need for the organization to increase patient partner diversity. This self-study was perceived as rewarding as it provided a foundation for further growth in patient involvement within the organization.