Heather L Gainforth1, Femke Hoekstra2, Rhyann McKay2, Christopher B McBride3, Shane N Sweet4, Kathleen A Martin Ginis5, Kim Anderson6, John Chernesky7, Teren Clarke8, Susan Forwell9, Jocelyn Maffin3, Lowell T McPhail10, W Ben Mortenson11, Gayle Scarrow12, Lee Schaefer13, Kathryn M Sibley14, Peter Athanasopoulos15, Rhonda Willms16. 1. School of Health and Exercise Sciences, University of British Columbia Okanagan, Kelowna, British Columbia, Canada; International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada. Electronic address: heather.gainforth@ubc.ca. 2. School of Health and Exercise Sciences, University of British Columbia Okanagan, Kelowna, British Columbia, Canada; International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada. 3. Spinal Cord Injury British Columbia, Vancouver, British Columbia, Canada. 4. Department of Kinesiology and Physical Education, McGill University, Montreal, Quebec, Canada; Center for Interdisciplinary Research in Rehabilitation of Greater Montreal (CRIR), Montreal, Quebec, Canada. 5. School of Health and Exercise Sciences, University of British Columbia Okanagan, Kelowna, British Columbia, Canada; International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada; Department of Medicine, Division of Physical Medicine and Rehabilitation, University of British Columbia, Vancouver, British Columbia, Canada. 6. Department of Physical Medicine and Rehabilitation, Case Western Reserve University, Cleveland, Ohio. 7. Praxis Spinal Cord Institute, Vancouver, British Columbia, Canada. 8. Spinal Cord Injury Alberta, Edmonton, Alberta, Canada. 9. School of Health and Exercise Sciences, University of British Columbia Okanagan, Kelowna, British Columbia, Canada; International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada; Faculty of Medicine, Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, British Columbia, Canada. 10. International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada. 11. International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada; Faculty of Medicine, Department of Occupational Science and Occupational Therapy, University of British Columbia, Vancouver, British Columbia, Canada. 12. Michael Smith Foundation for Health Research, Vancouver, British Columbia, Canada. 13. Department of Kinesiology and Physical Education, McGill University, Montreal, Quebec, Canada. 14. Department of Community Health Sciences, University of Manitoba, Winnipeg, Manitoba, Canada. 15. Spinal Cord Injury Ontario, Toronto, Ontario, Canada. 16. International Collaboration on Repair Discoveries, Vancouver, British Columbia, Canada; Department of Medicine, Division of Physical Medicine and Rehabilitation, University of British Columbia, Vancouver, British Columbia, Canada.
Abstract
OBJECTIVE: To address a gap between spinal cord injury (SCI) research and practice by rigorously and systematically co-developing integrated knowledge translation (IKT) guiding principles for conducting and disseminating SCI research in partnership with research users. DESIGN: The process was guided by the internationally accepted The Appraisal of Guidelines for REsearch & Evaluation (AGREE) II Instrument for evaluating the development of clinical practice guidelines. SETTING: North American SCI research system (ie, SCI researchers, research users, funders). PARTICIPANTS: The multidisciplinary expert panel (n=17) and end users (n=35) included individuals from a North American partnership of SCI researchers, research users, and funders who have expertise in research partnerships. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Clarity, usefulness, and appropriateness of the principles. RESULTS: Data regarding 125 principles of partnered research were systematically collected from 4 sources (review of reviews, scoping review, interviews, Delphi consensus exercise). A multidisciplinary expert panel held a 2-day meeting to establish consensus, select guiding principles, and draft the guidance. The panel reached 100% consensus on the principles and guidance document. The final document includes a preamble, 8 guiding principles, and a glossary. Survey data showed that the principles and guidance document were perceived by potential end users as clear, useful, and appropriate. CONCLUSIONS: The IKT Guiding Principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI research partnerships. The principles are a foundational tool with the potential to improve the relevance and impact of SCI research, mitigate tokenism, and advance the science of IKT.
OBJECTIVE: To address a gap between spinal cord injury (SCI) research and practice by rigorously and systematically co-developing integrated knowledge translation (IKT) guiding principles for conducting and disseminating SCI research in partnership with research users. DESIGN: The process was guided by the internationally accepted The Appraisal of Guidelines for REsearch & Evaluation (AGREE) II Instrument for evaluating the development of clinical practice guidelines. SETTING: North American SCI research system (ie, SCI researchers, research users, funders). PARTICIPANTS: The multidisciplinary expert panel (n=17) and end users (n=35) included individuals from a North American partnership of SCI researchers, research users, and funders who have expertise in research partnerships. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Clarity, usefulness, and appropriateness of the principles. RESULTS: Data regarding 125 principles of partnered research were systematically collected from 4 sources (review of reviews, scoping review, interviews, Delphi consensus exercise). A multidisciplinary expert panel held a 2-day meeting to establish consensus, select guiding principles, and draft the guidance. The panel reached 100% consensus on the principles and guidance document. The final document includes a preamble, 8 guiding principles, and a glossary. Survey data showed that the principles and guidance document were perceived by potential end users as clear, useful, and appropriate. CONCLUSIONS: The IKT Guiding Principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI research partnerships. The principles are a foundational tool with the potential to improve the relevance and impact of SCI research, mitigate tokenism, and advance the science of IKT.
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