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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 Introduction Integrated knowledge translation (IKT) is a partnered approach to research that aims to ensure research findings are applied in practice and policy. IKT can be used during diffusion and dissemination of research findings. However, there is a lack of understanding how an IKT approach can support the diffusion and dissemination of research findings. In this study, we documented and described the processes and outcomes of an IKT approach to diffusing and disseminating the findings of consensus recommendations for conducting spinal cord injury research. Methods Communication of the IKT Guiding Principles in two phases: a diffusion phase during the first 102 days from the manuscript’s publication, followed by a 1147 day active dissemination phase. A record of all inputs was kept and all activities were tracked by monitoring partnership communication, a partnership tracking survey, a project curriculum vitae, and team emails. Awareness outcomes were tracked through Google Analytics and a citation-forward search. Awareness includes the website accesses, the number of downloads, and the number of citations in the 29 month period following publication. Results In the diffusion period, the recommendations were viewed 60 times from 4 different countries, and 4 new downloads. In the dissemination period, the recommendations were viewed 1109 times from 39 different countries, 386 new downloads, and 54 citations. Overall, during dissemination there was a 17.5% increase in new visitors to the website a month and a 95.5% increase in downloads compared to diffusion. Conclusion This project provides an overview of an IKT approach to diffusion and dissemination. Overall, IKT may be helpful for increasing awareness of research findings faster; however, more research is needed to understand best practices and the the impact of an IKT approach on the diffusion and dissemination versus a non-partnered approach.

Background Research partnership approaches are becoming popular within spinal cord injury (SCI) health research system, providing opportunities to explore experiences of and learn from SCI research partnership champions. This study aimed to explore and describe SCI researchers’ and research users’ (RU’) experiences with and reasons for conducting and/or disseminating (health) research in partnership in order to gain more insight into potentially ways to build capacity for and foster change to support research partnerships within a health research system. Methods Underpinned by a pragmatic perspective, ten semi-structured timeline interviews were conducted with researchers and RU who have experiences with SCI research partnerships. Interviews focused on experiences in participants’ lives that have led them to become a person who conducts and/or disseminates research in partnership. Data were analysed using narrative thematic analysis. Results We identified three threads from participants’ stories: (1) seeing and valuing different perspectives, (2) inspirational role models, and (3) relational and personal aspect of research partnerships. We identified sub-threads related to experiences that participants draw on how they came to be a person who engage in (health) research partnerships, and sub-threads related to participants’ reasons for engaging in research partnerships. While most subthreads were identified from both researchers’ and RU’ perspectives (eg, partnership successes and failures), some were unique for researchers (morally the right thing to do) or RU (advocating). Conclusion Using a narrative and pragmatic approach, this study provided a new understanding of SCI researchers’ and RU’ partnership experiences over time. We found that participants’ research partnership experiences and motivations align with components of leadership theories. The findings from this study may be used to inform strategies and policy programs to build capacity for conducting and disseminating (health) research in partnership, within and beyond SCI research.