Study DesignMixed-method consensus development project.ObjectiveTo identify the top ten research priorities for spinal cord injury (SCI).SettingNationwide in Sweden in 2021–22.MethodThe priority setting partnership process proposed by the James Lind Alliance was used. It comprises two main phases: question identification and priority selection. People living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included.ResultsIn the first phase, 242 respondents provided 431 inputs addressing potentially unanswered questions. Of these inputs, 128 were beyond the scope of this study. The remaining 303 were merged to formulate 57 questions. The literature review found one questions answered, so 56 questions proceeded to the prioritisation. In the second phase, the interim prioritisation survey, 276 respondents ranked the 56 questions. The top 24 questions then proceeded to the final prioritisation workshop, at which 23 participants agreed on the top ten priorities.ConclusionThis work reveals issues that persons living with SCI, relatives to persons with SCI as well as health care professionals and personal care attendants working with SCI find difficult to get answered.The highest prioritised question in this study is to address specialist SCI care and rehabilitation, followed by questions addressing physical health. Other topics include Mental health, Ageing with SCI, Community support and personal care assistance, and Body functions. This result can guide SCI researchers to design appropriate studies for the questions that matter most to the people with SCI.

Study design Mixed-method consensus development project. Objective To identify the top ten research priorities for spinal cord injury (SCI). Setting Nationwide in Sweden in 2021–22. Methods The PSP process proposed by the James Lind Alliance was used. It comprises two main phases: question identification and priority selection. People living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included. Results In the first phase, 242 respondents provided 431 inputs addressing potentially unanswered questions. Of these, 128 were beyond the scope of this study. The remaining 303 were merged to formulate 57 questions. The literature review found one question answered, so 56 questions proceeded to the prioritisation. In the second phase, the interim prioritisation survey, 276 respondents ranked the 56 questions. The top 24 questions then proceeded to the final prioritisation workshop, at which 23 participants agreed on the top ten priorities. Conclusions This paper reveals issues that people living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI find difficult to get answered. The top-priority questions for people living with SCI in Sweden concern specialist SCI care and rehabilitation, followed by a number of questions addressing physical health. Other topics, from the 56 key questions include Mental health, Ageing with SCI, Community support and personal care assistance, and Body functions. This result can guide researchers to design appropriate studies relevant to people with SCI. Sponsorship The project was funded by the Gothenburg Competence Centre for Spinal Cord Injury and the Swedish Association for Survivors of Accident and Injury (RTP).

There is a ‘need to know’ for people who have acquired a spinal cord injury (SCI)1 and a ‘lack of knowledge’ is considered to be a barrier to coping with SCI 2. In-patient SCI care and rehabilitation have emphasized that information should be provided in the right amounts, at the right place and at the right time 3. Such needs and timing probably go beyond initial care and rehabilitation. Likewise, there is also, reasonably a need for knowledge for other groups of people meeting people with SCI,4,5 such as relatives, health professionals and personal care assistants as well as authorities, decision-makers, employers, architects and city planners etc. Our recent work,7 shows that more evidence is needed regarding the provision of specialist expertise in SCI by care services and to what extent they are therefore able to respond to the needs of people living with SCI.A Swedish need assessment project, including a priority setting partnership (PSP ) according to James Lind Alliance,8 has been implemented nationwide 2021–22 to address the needs which are most important for people with SCI to enhance their lives. The Swedish need assessment project comprises three parts: (a) needs to be met; (b) questions to be answered; (c) knowledge required. In part (b), which is the PSP we have identified research priorities7 (e.g. knowledge gaps); while in part (c), presented here, we report results from an online survey addressing knowledge translation gaps in order to shed light on the knowledge that is available yet which does not reach out.

Study Design Mixed-method consensus development project. Objective To identify the top ten research priorities for spinal cord injury (SCI). Setting Nationwide in Sweden in 2021–22. Method The priority setting partnership process proposed by the James Lind Alliance was used. It comprises two main phases: question identification and priority selection. People living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included. Results In the first phase, 242 respondents provided 431 inputs addressing potentially unanswered questions. Of these inputs, 128 were beyond the scope of this study. The remaining 303 were merged to formulate 57 questions. The literature review found one questions answered, so 56 questions proceeded to the prioritisation. In the second phase, the interim prioritisation survey, 276 respondents ranked the 56 questions. The top 24 questions then proceeded to the final prioritisation workshop, at which 23 participants agreed on the top ten priorities. Conclusions This work reveals issues that persons living with SCI, relatives to persons with SCI as well as health care professionals and personal care attendants working with SCI find difficult to get answered. The highest prioritised question in this study is to address specialist SCI care and rehabilitation, followed by questions addressing physical health. Other topics include Mental health, Ageing with SCI, Community support and personal care assistance, and Body functions. This result can guide SCI researchers to design appropriate studies for the questions that matter most to the people with SCI.