Experiences Using Patient and Public Involvement in Digital Health Research for Multiple Sclerosis

Conference paper (2022)

Authors

Tiia Yrttiaho University of Oulu
Minna Isomursu University of Oulu
Guido Giunti Applied Ergonomics and Design - IDE , University of Oulu
Research Group
Applied Ergonomics and Design (IDE) (TU Delft)
Copyright: © 2022 Tiia Yrttiaho, Minna Isomursu, Guido Giunti
DOI
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https://doi.org/10.3233/SHTI220574
Multiple sclerosis Digital health Mhealth Patient and public involvement
More Info
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Published Date

2022

Language

English

Faculty

Industrial Design Engineering

Department

Human-Centered Design

Research Group

Applied Ergonomics and Design

Abstract

Patient and public involvement (PPI) is increasingly used for improving quality of the research. There are many barriers in translating PPI into practice, including lacking examples of good practices. Frameworks that have been developed in one setting do not readily transfer to other settings. In this paper, we examine the implementation of PPI in the context of a digital health research project that explores the design, development and use of mHealth for persons with Multiple Sclerosis taking an iterative user-centered design approach. Methods: Instrumental case study to describe the PPI process on a digital health research project. Results: Overall experience was positive. We found 3 roles for PPI involvement: strategic members; design and development partners; and expert members. Challenges lay on unclear PPI terminology; managing roles and expectations; and ensuring accessibility.