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Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users. [ABSTRACT FROM AUTHOR]

Research partnerships, while promising for ensuring translation of relevant and useable findings, are challenging and need support. This study aimed to apply behavior change theory to understand and support researchers' adoption of a research partnership approach and the Integrated Knowledge Translation (IKT) Guiding Principles for conducting and disseminating spinal cord injury (SCI) research in partnership. Using an IKT approach, SCI researchers across Canada and the USA completed a survey (n = 22) and were interviewed (n = 13) to discuss barriers and facilitators to deciding to partner and follow the IKT Guiding Principles. The Behaviour Change Wheel, Theoretical Domains Framework (TDF), and Mode of Delivery Ontology were used to develop the survey, interview questions, and guided analyses of interview data. COM-B and TDF factors were examined using descriptive statistics and abductive analyses of barriers and facilitators of decisions to partner and/or use the IKT Guiding Principles. TDF domains from the interview transcripts were then used to identify intervention, content, and implementation options. 142 factors (79 barriers, 63 facilitators) related to deciding to partner, and 292 factors (187 barriers, 105 facilitators) related to deciding to follow the IKT Guiding Principles were identified. Barriers to partnering or use the IKT Guiding Principles were primarily related to capability and opportunity and relevant intervention options were recommended. Interventions must support researchers in understanding how to partner and use the IKT Guiding Principles while navigating a research system, which is not always supportive of the necessary time and costs required for meaningful research partnerships. [ABSTRACT FROM AUTHOR]

To establish consensus regarding principles that should be used to guide spinal cord injury (SCI) research partnerships between researchers and research users. A three-round Delphi consensus exercise was carried out with researchers and/or research users involved in one or more SCI research partnerships. Participants considered a list of 125 partnership principles. In rounds 1 and 2, participants rated their agreement that a principle should guide SCI research partnerships on an 11-point Likert scale. After each round, principles that received a mean score of ≥8.0 or 70% of participants rated the principle ≥8.0 were retained. In round 3, participants categorized principles as essential, desirable, irrelevant, or unsure. At least 20 individuals participated in each round. In round 1, 103 principles met consensus criteria and eight principles were added. In round 2, 93 principles met the criteria. In round 3, 29 principles were categorized as essential and eight as desirable. Recommended principles focused on the interpersonal, relational, and logistical aspects of partnerships. Principles that did not reach consensus related to social justice and actionable impact. Findings provide insight into 37 principles that could be used to combat tokenism and inform future guidance to meaningfully engage partners in SCI research. Consensus-based research partnership principles (i.e., norms or beliefs) were identified and could be prioritized to help support spinal cord injury (SCI) researchers and research users combat tokenism and meaningfully engage research users as partners in the co-creation of knowledge. The resulting list of recommended research partnership principles was used to inform the development of guidance to support quality partnerships between SCI researchers and research users within and outside the rehabilitation context (). Guidance supporting meaningful research partnerships may accelerate the time between discovery and use of research in practice. [ABSTRACT FROM AUTHOR]