I’m pleased to bring news this week of the successful completion of our second Biomedical Research Centre-funded James Lind Alliance (JLA) Priority Setting Partnership (PSP).
The Spinal Cord Injury (SCI) PSP was initiated by Dr Joost Van Middendorp, Research Director at the Stoke Mandeville Spinal Foundation and a Research Fellow of Harris Manchester College. This PSP brought together patient and carer representatives and healthcare professionals to identify and prioritise the most important research questions for anyone with an interest in spinal cord injury. As with all JLA PSPs, the core aim was to help ensure that research addresses the topics most relevant to those with direct experience of the condition, be it personal or professional.
As Dr van Middendorp says “Following a comprehensive, rigorous, and inclusive process, with equal participation from individuals with SCI, carers, and health professionals, the SCI research agenda has been defined by people to whom it matters most and this should now inform the scope and future activities of funders and researchers alike.”
A two-stage survey process was used to gather possible research questions and then to rank them in order of priority. The surveys were open to anyone, and hundreds of people took part. The last stage was a final prioritisation workshop, where twenty five people with a SCI, representatives of service user organisations, carers and healthcare professionals came together to consider and discuss the outcomes from the second survey and agree their ‘Top 10’ research priorities.
The Top 3 were:
1. Does activity based rehabilitation, including functional electrical stimulation coupled with physical activity and hydrotherapy, improve outcomes such as muscle function and neuroplasticity [changes in nerve pathways] after spinal cord injury?
2. Does stem cell therapy result in better outcomes after spinal cord injury and does this depend on the type of injury (e.g. acute or chronic; complete or incomplete)?
3. Does the provision of care packages in the community, including physiotherapy, after discharge from hospital improve the health and wellbeing of people living with spinal cord injury?
As with several other PSPs, these and other questions span those from the forefront of technology to aspects of everyday care. And as ever, it is amazing how much the PSP has revealed about what we don’t know.
Paul Smith, Chief Executive Officer of the Spinal Injuries Association, is delighted with the outcome of the SCI-PSP. “The way that anyone with an interest in spinal cord injury has been able to contribute to identifying future research priorities is just fantastic and has produced some really interesting results” he said. “I look forward to seeing future research address these issues, which are demonstrably important to the spinal cord injury community”.
Stop press: a new BRC-supported PSP gathering research questions from people who have had kidney transplants, are on the transplant waiting list, have been a living kidney donor or their personal or professional carers launched this week.