Mobilizing patient and public involvement in the development of real-world digital technology solutions: tutorial

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• dc.contributor.author Keogh, Alison
• dc.contributor.author Delgado Ortiz, Laura
• dc.contributor.author Mobilise-D consortium
• dc.date.accessioned 2024-02-19T07:19:37Z
• dc.date.available 2024-02-19T07:19:37Z
• dc.date.issued 2023
• dc.description.abstract Although the value of patient and public involvement and engagement (PPIE) activities in the development of new interventions and tools is well known, little guidance exists on how to perform these activities in a meaningful way. This is particularly true within large research consortia that target multiple objectives, include multiple patient groups, and work across many countries. Without clear guidance, there is a risk that PPIE may not capture patient opinions and needs correctly, thereby reducing the usefulness and effectiveness of new tools. Mobilise-D is an example of a large research consortium that aims to develop new digital outcome measures for real-world walking in 4 patient cohorts. Mobility is an important indicator of physical health. As such, there is potential clinical value in being able to accurately measure a person's mobility in their daily life environment to help researchers and clinicians better track changes and patterns in a person's daily life and activities. To achieve this, there is a need to create new ways of measuring walking. Recent advancements in digital technology help researchers meet this need. However, before any new measure can be used, researchers, health care professionals, and regulators need to know that the digital method is accurate and both accepted by and produces meaningful outcomes for patients and clinicians. Therefore, this paper outlines how PPIE structures were developed in the Mobilise-D consortium, providing details about the steps taken to implement PPIE, the experiences PPIE contributors had within this process, the lessons learned from the experiences, and recommendations for others who may want to do similar work in the future. The work outlined in this paper provided the Mobilise-D consortium with a foundation from which future PPIE tasks can be created and managed with clearly defined collaboration between researchers and patient representatives across Europe. This paper provides guidance on the work required to set up PPIE structures within a large consortium to promote and support the creation of meaningful and efficient PPIE related to the development of digital mobility outcomes.
• dc.format.mimetype application/pdf
• dc.identifier.citation Keogh A, Mc Ardle R, Diaconu MG, Ammour N, Arnera V, Balzani F et al. Mobilizing patient and public involvement in the development of real-world digital technology solutions: tutorial. J Med Internet Res. 2023 Oct 27;25:e44206. DOI: 10.2196/44206
• dc.identifier.doi http://dx.doi.org/10.2196/44206
• dc.identifier.issn 1439-4456
• dc.identifier.uri http://hdl.handle.net/10230/59122
• dc.language.iso eng
• dc.publisher JMIR Publications
• dc.relation.ispartof J Med Internet Res. 2023 Oct 27;25:e44206
• dc.rights © Alison Keogh, Ríona Mc Ardle, Mara Gabriela Diaconu, Nadir Ammour, Valdo Arnera, Federica Balzani, Gavin Brittain, Ellen Buckley, Sara Buttery, Alma Cantu, Solange Corriol-Rohou, Laura Delgado-Ortiz, Jacques Duysens, Tom Forman-Hardy, Tova Gur-Arieh, Dominique Hamerlijnck, John Linnell, Letizia Leocani, Tom McQuillan, Isabel Neatrour, Ashley Polhemus, Werner Remmele, Isabel Saraiva, Kirsty Scott, Norman Sutton, Koen van den Brande, Beatrix Vereijken, Martin Wohlrab, Lynn Rochester, Mobilise-D consortium. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.10.2023. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri http://creativecommons.org/licenses/by/4.0/
• dc.subject.keyword Digital mobility measures
• dc.subject.keyword Digital mobility outcomes
• dc.subject.keyword Patient engagement
• dc.subject.keyword Patient involvement
• dc.subject.keyword Public-private partnership
• dc.subject.keyword Real-world mobility
• dc.subject.keyword Research consortium
• dc.title Mobilizing patient and public involvement in the development of real-world digital technology solutions: tutorial
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion