Versus Arthritis Musculoskeletal Disorders Research Advisory Group Priority Setting Exercise: a Protocol

Paskins, Z.; Manning, F.; Farmer, C.; Le Maitre, C.; Clark, E.; Mason, D.; Wilkinson, C.; Andersson, D.; Barlow, T.; Bishop, F.; Brown, C.; Clark, A.; Dulake, D.; Gulati, M.; Jones, R.; Loughlin, J.; McCarron, M.; Millar, N.; Pandit, H.; Peat, G.; Richardson, S.; Salt, E.; Taylor-Wormald, J.; Troeberg, L.; Wilcox, R.; Wise, E.; Rudkin, S.; Watt, F. E.

Involving research users in setting priorities for musculoskeletal research is essential to raise awareness of the unmet needs for MSK research, to ensure research outcomes are patient-centred and relevant, have a high likelihood of resulting in patient benefit, reduce research waste and increase research value and impact. In 2018, Versus Arthritis convened an MSK Disorders Research Advisory Group (RAG) which included people with arthritis, health care professionals and researchers in MSK, in order to identify and prioritise research areas with a long-term aim of improving quality and impact of MSK research. On further review, there were few previous prioritisation approaches in this area looking across discovery science to more clinical research, at important research questions which might be common to a range of disorders or approaches incorporating input at all stages of the process by a range of stakeholders including people with arthritis. The group identified that more work to define research priorities in these areas was justified and designed a research priority setting process for MSK disorders. This manuscript documents the methodology that was developed by the group for this process. Methods: Following a review, the Child Health and Nutrition Research Initiative (CHNRI) method for research prioritisation was selected as best aligning with the needs of this process. The group agreed on adaptations to the CHNRI approach, context, purpose and remit of the exercise and identified through consensus four priority research Domains: Mechanisms of disease; Diagnosis (including early diagnosis) and measuring the impact of these disorders; Living well with MSK disorders and Successful Translation. From all published CHNRI scoring criteria for generated research avenues or themes of research, the group identified six which were most relevant to this process. To ensure accessibility of the survey and scoring, these were refined to three: Equity (considered cross cutting, not scored but considered throughout the process), Importance (Will research in this area have potential to lead to important new knowledge) and Impact (Might research in this area make a difference). Importance and Impact were to be scored on a scale of 1-10 for each research avenue with equal weighting of these two criteria in the subsequent generation of a total score. Data collection: Following ethical approval, an electronic first survey asking for important research uncertainties in the four research domains and any other areas will be distributed to all stakeholders (people with arthritis, researchers in all stages of MSK disorders research, healthcare professionals, industry e.g. pharmaceutical and medical technology companies, research funders, healthcare providers, government policy makers and charities). The next step is to consolidate all the gathered research uncertainties from the first survey into finalised research domains and avenues. Uncertainties will be summarised using deductive thematic analysis and organised into possible themes which will then be considered and refined by each of four appointed subgroups within the RAG. Following group and lay review and refinement of the wording including tests of readability, the second survey including this full list of research avenues will be submitted for ethical approval. The second survey will be completed by the same range of stakeholders as the first survey, both those who previously completed and new respondents. Respondents will be invited to rate each research avenue using the two scoring criteria, with the avenues presented in a random sequence to avoid bias. Analysis Plan: All available data will be analysed, from all respondents completing the survey in full and all partial respondents. For each research avenue, a mean criterion score will be calculated for each of the two criteria from all available survey responses (considering the number of respondents in each case), and then the two mean criterion scores will be summed to create a total score. Response rates and missing data for scoring of avenues will be reported. The primary prioritisation output of this exercise will be to produce a single ranked list of these total scores of research avenues, from highest to lowest. The most highly ranked avenues will be highlighted, for example the top five to top ten overall and from each research domain, with the exact number and nature of this depending on the distribution of the data. Respondent characteristics will be summarised including self-identified stakeholder group, age group, gender and ethnic background, to describe the diversity and representation within the survey respondents as far as possible. Dissemination plan: Findings will be communicated in a number of formats, both written and spoken, to ensure accessibility to all stakeholders, and will also be used by the charity in internal strategy development. Dissemination will include the submission of a manuscript to a peer-reviewed journal.