Principles to guide spinal cord injury research partnerships: a Delphi consensus study

Abstract

Purpose To establish consensus regarding principles that should be used to guide spinal cord injury (SCI) research partnerships between researchers and research users. Materials and methods 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. Results 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. Conclusions Findings provide insight into 37 principles that could be used to combat tokenism and inform future guidance to meaningfully engage partners in SCI research. Implications for Rehabilitation 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 (www.IKTprinciples.com). Guidance supporting meaningful research partnerships may accelerate the time between discovery and use of research in practice.