Projects to determine 'Top Ten' lists of questions for health research vary considerably in their influence over what research is actually done, finds research on the impact of James Lind Alliance Priority Setting Partnerships.
Established 20 years ago, the James Lind Alliance promotes the involvement of patients and lay people in deciding what questions should be prioritised for health research. People with Parkinson’s disease and their carers, for example, may have important ideas for new research studies in that condition that would otherwise go undocumented. Various James Lind Alliance Priority-Setting Partnerships have since been undertaken to identify ‘top ten research priorities’ for a wide range of health conditions.
Funded by the National Institute for Health Research Oxford Biomedical Research Centre, independent researchers Sally Crowe and Kristina Staley have undertaken an empirical evaluation of the experiences of patients and researchers in contributing to these exercises.
20 people involved in Priority Setting Partnerships were interviewed, including 13 project leads from charities, universities and patient groups - some of which fund research.
The research indicates that whilst the Priority Setting Partnerships investigated succeeded in producing ‘top ten’ lists of research priorities, they varied considerably in the extent to which these priority lists influenced the research that was actually done.
Across the sample, there was wide variation in reasons for establishing Priority Setting Partnerships and multiple interacting influences on their success.
Importantly, research priority-setting partnerships sometimes didn’t plan enough activities to disseminate their findings (e.g. too little consideration of how to influence the way research funders allocated their money). In many cases there was confusion about who ‘owned’ the outputs of the exercise, and whose interests they should serve.
Workshops to share these findings with patients and the public are now being developed by Project Lead, Professor Trish Greenhalgh, Nuffield Department of Primary Care Health Sciences. An academic paper is also being written along with co-design approaches to improve the follow-through on Priority Setting Partnerships.
> Download the report More than a Top 10: How James Lind Alliance Priority Setting Partnerships transform research, people and organisations. Kristina Staley, Sally Crowe. September 2019.