Developing a spinal cord injury research strategy using a structured process of evidence review and stakeholder dialogue. Part III: outcomes

Abstract

Study design: Focus Group. Objectives: To develop a unified, regional spinal cord injury (SCI) research strategy for Australia and New Zealand. Setting: Australia. Methods: A 1-day structured stakeholder dialogue was convened in 2013 in Melbourne, Australia, by the National Trauma Research Institute in collaboration with the SCI Network of Australia and New Zealand. Twenty-three experts participated, representing local and international research, clinical, consumer, advocacy, government policy and funding perspectives. Preparatory work synthesised evidence and articulated draft principles and options as a starting point for discussion. Results: A regional SCI research strategy was proposed, whose objectives can be summarised under four themes. (1) Collaborative networks and strategic partnerships to increase efficiency, reduce duplication, build capacity and optimise research funding. (2) Research priority setting and coordination to manage competing studies. (3) Mechanisms for greater consumer engagement in research. (4) Resources and infrastructure to further develop SCI data registries, evaluate research translation and assess alignment of research strategy with stakeholder interests. These are consistent with contemporary international SCI research strategy development activities. Conclusion: This first step in a regional SCI research strategy has articulated objectives for further development by the wider SCI research community. The initiative has also reinforced the importance of coordinated, collective action in optimising outcomes following SCI.

Ambulances are for emergencies: shifting attitudes through a research-informed behaviour change campaign

“…The addition of semi-structured interviews adds a critical dimension to the academic literature review. Where literature answers the question ‘what does the evidence say?’, interviews can address the question ‘what’s happening in practice and how will this affect implementation?’; both perspectives are useful in a policy-making context, especially if the intersection between evidence and practice is able to be identified, as demonstrated by previous published Forum projects [10–12].…”

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI

“…This study demonstrates the strength of focus groups, where caregivers are together and able to provide each other with needed supports, while also sharing critical information with researchers. This research is additive to understanding family perspectives on unmet needs, as well as involving families in helping to shape research studies and health care programs [50][51][52]. In addition to the need for the development and evaluation of a variety of pediatric caregiver-focused interventions, this research adds to the calls for more service and research attention on families [3,4,14,15] including youth who live with chronically ill siblings [4,53,54].…”

Facilitators and Barriers to International Collaboration in Spinal Cord Injury: Results from a Survey of Clinicians and Researchers

“…C linical research in a health condition such as spinal cord injury (SCI) can be challenging. 1 , 2 The lower incidence and prevalence of SCI, compared with other major health conditions such as stroke or cancer, poses inherent challenges to participant recruitment. 3 , 4 In addition, the cost of conducting clinical studies is high and the expertise required to execute them is highly specialized.…”