A Systematic Review of Patient Engagement Experiences in Brain Disorders

Deborah Bertorello,1 Giampaolo Brichetto,1 Frans Folkvord,2,3 Alexandra Theben,4 Paola Zaratin1 1Italian Multiple Sclerosis Society Foundation, Genoa, Italy; 2Open Evidence Research, Barcelona, Spain; 3Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences, Tilburg University, Tilburg, the Netherlands; 4Department of Management, Humanities, Law and Society, UPF-Barcelona School of Management, Barcelona, SpainCorrespondence: Deborah Bertorello, Italian Multiple Sclerosis Society Foundation, Via Operai, 40, Genoa, 16149, Italy, Tel + 39 010 2713 247, Fax + 39 010 2713 205, Email deborah.bertorello@aism.itBackground: Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce.Aim: To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation.Methods: Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria.Results: In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices.Discussion: Findings are ...