دورية أكاديمية
Mobilizing patient and public involvement in the development of real-world digital technology solutions: tutorial
| العنوان: | Mobilizing patient and public involvement in the development of real-world digital technology solutions: tutorial |
|---|---|
| المؤلفون: | Keogh, A., Mc Ardle, R., Diaconu, M.G., Ammour, N., Arnera, V., Balzani, F., Brittain, G., Buckley, E., Buttery, S., Cantu, A., Corriol-Rohou, S., Delgado-Ortiz, L., Duysens, J., Forman-Hardy, T., Gur-Arieh, T., Hamerlijnck, D., Linnell, J., Leocani, L., McQuillan, T., Neatrour, I., Polhemus, A., Remmele, W., Saraiva, I., Scott, K., Sutton, N., van den Brande, K., Vereijken, B., Wohlrab, M., Rochester, L. |
| بيانات النشر: | JMIR Publications Inc. |
| سنة النشر: | 2023 |
| المجموعة: | White Rose Research Online (Universities of Leeds, Sheffield & York) |
| الوصف: | 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 ... |
| نوع الوثيقة: | article in journal/newspaper |
| وصف الملف: | text |
| اللغة: | English |
| العلاقة: | https://eprints.whiterose.ac.uk/207982/1/PDF%20%282%29.pdfTest; Keogh, A. orcid.org/0000-0001-5917-6308 , Mc Ardle, R. orcid.org/0000-0001-7959-3563 , Diaconu, M.G. orcid.org/0000-0002-1482-8306 et al. (26 more authors) (2023) Mobilizing patient and public involvement in the development of real-world digital technology solutions: tutorial. Journal of Medical Internet Research, 25. e44206. ISSN 1439-4456 |
| الإتاحة: | https://eprints.whiterose.ac.uk/207982Test/ https://eprints.whiterose.ac.uk/207982/1/PDF%20%282%29.pdfTest |
| حقوق: | cc_by_4 |
| رقم الانضمام: | edsbas.16270850 |
| قاعدة البيانات: | BASE |
| الوصف غير متاح. |