Improving alignment between research priorities and needs of people with multiple sclerosis: A worldwide, multi-stakeholder priority setting exercise
2Cochrane Neurological Sciences Field, Direzione Regionale Salute, Welfare, Sviluppo economico, Istruzione, Università, Diritto allo Studio Servizio Programmazione dell'assistenza Ospedaliera Regione Umbria, Perugia, Italy
In 2020 Cochrane Multiple Sclerosis (MS) Review Group, with Cochrane Neurological Sciences Field, launched a global priority setting exercise to elicit the research priorities of people with MS (PwMS), carers, advocates and health care professionals.
Objectives: To prioritize pressing questions and ensure that future systematic reviews are useful as possible to the people who need them.
Methods: Methods were informed by Cochrane guidance. A working group mapped the evidence base and provided a provisional list of topics, refined iteratively with a multi-stakeholder steering group including clinicians, researchers, one representative of the MS International Federation (MSIF) and one PwMS. A second stage, with help from Cochrane Web Operations, included creating and disseminating an online multi-stakeholder survey, translated into eleven languages by volunteer native speakers recruited via contacts and Cochrane Engage, who also assisted with translating responses. 1.190 questionnaires were correctly completed (1), mainly by PwMS (74%) and their families as well as healthcare professionals from 55 countries worldwide.
Results: Based on the five top-priority ranked topics for the highest number of respondents (Table 1) systematic reviews on topics that are meaningful and useful for PwMS and carers and include consumer authors are underway. Next, we will further explore the determinants of these choices to better understand the values that inform them by means of a forthcoming thematic analysis of free text answers explaining ranking and through consultation with consumer/stakeholder panels. Conclusions & Relevance statement: Our multi-stakeholder collaboration offers a worldwide perspective on priority areas for evidence synthesis on MS. Notably, only one of the top-ranked topics deals with pharmacological interventions. This ongoing priority setting process highlights a mismatch between the priorities of PwMS and their carers and research on drugs, on which a disproportionate share of research focus and resources is currently implemented. Taking into account the values of consumers may improve allocation of resources in support of Cochrane’s knowledge translation mission. (1) Celani MG et al. Identifying unanswered questions and setting the agenda for future systematic research in Multiple Sclerosis. A worldwide, multi-stakeholder Priority Setting project. Mult Scler Relat Disord. 2022 Apr;60:103688.