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

Tiia Yrttiaho*, Minna Isomursu, Guido Giunti

*Corresponding author for this work

Research output: Chapter in Book/Conference proceedings/Edited volumeConference contributionScientificpeer-review

1 Citation (Scopus)
18 Downloads (Pure)

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.

Original languageEnglish
Title of host publicationChallenges of Trustable AI and Added-Value on Health - Proceedings of MIE 2022
EditorsBrigitte Seroussi, Patrick Weber, Ferdinand Dhombres, Cyril Grouin, Jan-David Liebe, Jan-David Liebe, Jan-David Liebe, Sylvia Pelayo, Andrea Pinna, Bastien Rance, Bastien Rance, Lucia Sacchi, Adrien Ugon, Adrien Ugon, Arriel Benis, Parisis Gallos
PublisherIOS Press
Pages735-739
Number of pages5
ISBN (Electronic)9781643682846
DOIs
Publication statusPublished - 2022
Event32nd Medical Informatics Europe Conference, MIE 2022 - Nice, France
Duration: 27 May 202230 May 2022

Publication series

NameStudies in Health Technology and Informatics
Volume294
ISSN (Print)0926-9630
ISSN (Electronic)1879-8365

Conference

Conference32nd Medical Informatics Europe Conference, MIE 2022
Country/TerritoryFrance
CityNice
Period27/05/2230/05/22

Keywords

  • digital health
  • mhealth
  • Multiple sclerosis
  • patient and public involvement

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