Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership.

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.

Implementing Lived Experience Workshops in Regional Areas of British Columbia to Enhance Clinicians' Confidence in Spinal Cord Injury Care: An Evaluation.

In British Columbia (BC), there are challenges accessing specialized spinal cord injury care and resources. This paper evaluated the impact of spinal cord injury health educational workshops delivered in regional communities that were informed by persons with lived experience. A community survey was conducted with 44 persons with lived experience in a BC region to identify priority SCI health-related topics. Twenty-five topics were ranked from 1-14, with bowel and bladder management ranked 1 and 4, sexual health ranked 5, and pressure injuries ranked 7. Clinical perspectives on the priorities were collected from 102 clinicians in the BC region, who independently ranked 14 of these SCI topics and considered the former 4 topics to be lower clinical priority (ranked 11-14). These priorities informed a series of SCI clinical education workshops held at healthcare facilities in three regional cities. The goals were to improve clinicians' knowledge and confidence levels when managing spinal cord injury health and to facilitate person-centred care. Positive feedback demonstrated that educational workshops supported by lived experience perspectives effectively enhanced the clinicians' understanding of spinal cord injury and their priorities. Future plans include engaging more administrators as part of this initiative and conducting workshops in other regions of BC.

Spinal Cord Injury Community Personal Opinions and Perspectives on Spinal Cord Stimulation.

Background: Spinal cord stimulation (SCS) clinical trials are evaluating its efficacy and safety for motor, sensory, and autonomic recovery following spinal cord injury (SCI). The perspectives of people living with SCI are not well known and can inform the planning, delivery, and translation of SCS. Objectives: To obtain input from people living with SCI on the top priorities for recovery, expected meaningful benefits, risk tolerance, clinical trial design, and overall interest in SCS. Methods: Data were collected anonymously from an online survey between February and May 2020. Results: A total of 223 respondents living with SCI completed the survey. The majority of respondents identified their gender as male (64%), were 10+ years post SCI (63%), and had a mean age of 50.8 years. Most individuals had a traumatic SCI (81%), and 45% classified themselves as having tetraplegia. Priorities for improved outcome for those with complete or incomplete tetraplegia included fine motor skills and upper body function, whereas priorities for complete or incomplete paraplegia included standing and walking, and bowel function. The meaningful benefits that are important to achieve are bowel and bladder care, less reliance on caregivers, and maintaining physical health. Perceived potential risks include further loss of function, neuropathic pain, and complications. Barriers to participation in clinical trials include inability to relocate, out-of-pocket expenses, and awareness of therapy. Respondents were more interested in transcutaneous SCS than epidural SCS (80% and 61%, respectively). Conclusion: SCS clinical trial design, participant recruitment, and translation of the technology can be improved by better reflecting the priorities and preferences of those living with SCI identified from this study.

IKT Guiding Principles: demonstration of diffusion and dissemination in partnership.

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.

Often, research findings do not get to the people, groups, and/or institutions who could benefit from the findings. Two ways to help move research into practice more efficiently are to: (1) work in partnership with people who may benefit most from the research findings, and (2) share and communicate the findings of research beyond scientists. However, little is known about how to work in partnership while sharing the results of a research study. Therefore, this project demonstrates how a research partnership can work while promoting the results of their research project. Overall, working in partnership while sharing research findings may further help to ensure the research results are shared with those who could benefit from those findings.