Top Ten Research Priorities for Spinal Cord Injury: The Methodology and Results of a British Priority Setting Partnership

van Middendorp et al. (2016) full text summary PDF

For which topic were research priorities identified?

spinal cord injury

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Little is known about patients', caregivers' and healthcare professionals' preferred research questions into spinal cord injury (SCI). Many esteemed experts in SCI research have co-authored papers outlining recommendations and guidance for future research activities. However, these guiding documents do contain little to no considerations from consumers' perspectives.

What was the objective?

to identify gaps in scientific, medical, and psychosocial knowledge that matter most to patients, carers, and health professionals

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

2013 - 2014

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: steering group established, stakeholders and partner organizations identified. Step 2: gathering research questions: survey asking participants: What question (s) would you like researchers to answer that will help improve the treatment and care of people living with SCI?, 784 questions submitted. Step 3: data processing: data cleaning, check against evidence, resulting in 109 SCI research uncertainties in 25 categories. Step 4: interim ranking: via survey, participants were asked to rate how they would prioritize research for each uncertainty, top 25 uncertainties taken forward. Step 5: final prioritization: workshop: participants were sent shortlist of 25 uncertainties in advance of workshop and asked to individually reflect on the research questions, to write down any comments and to rank these questions in order of priority, during workshop small group discussions and small group rankings, discussions of aggregate rankings

Which stakeholders took part?

Patients, carers, and health professionals. Survey: 403 participants. Interim ranking: 293 participants. Workshop: 20 participants: 7 patient representatives, 1 caregiver, 11 healthcare professionals.

How were stakeholders recruited?

The survey was widely disseminated to targeted survey participants through service user organizations, professional societies and hospitals. Advertisements inviting people to participate were also displayed in specialist SCI centres across the UK. The Interim prioritization survey was widely disseminated, and those with an interest in SCI were invited to take part.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of representatives from each stakeholder organization, including an independent information manager. The members met face-to-face four times and participated in monthly teleconferences. The members developed protocol and monitored progress of the entire process. The members had voting rights and the mandate to reword research questions where needed.