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

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.