A Systematic Review of Patient Engagement Experiences in Brain Disorders

Deborah Bertorello; Giampaolo Brichetto; Frans Folkvord; Alexandra Theben; Paola Zaratin

doi:10.2147/PROM.S256396

A Systematic Review of Patient Engagement Experiences in Brain Disorders

Patient Relat Outcome Meas. 2022 Dec 13:13:259-272. doi: 10.2147/PROM.S256396. eCollection 2022.

Authors

Deborah Bertorello¹, Giampaolo Brichetto¹, Frans Folkvord^{2

3}, Alexandra Theben⁴, Paola Zaratin¹

Affiliations

¹ Italian Multiple Sclerosis Society Foundation, Genoa, Italy.
² Open Evidence Research, Barcelona, Spain.
³ Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences, Tilburg University, Tilburg, the Netherlands.
⁴ Department of Management, Humanities, Law and Society, UPF-Barcelona School of Management, Barcelona, Spain.

Abstract

Background: 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 inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of "expert patients" in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.

Keywords: brain disorders; patient engagement; patient reported outcomes; responsible research and innovation; systematic review.

Publication types

Review