ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Developing a patient-educator program for adolescents with juvenile arthritis: exploring motivation sources, barriers, and facilitators.Canadian medical education journal · 2026Article
- Developing a culturally relevant bereavement needs assessment tool (CANCOPE-PI) for caregivers of children with cancer in India: a participatory research approach.Research involvement and engagement · 2026Article
- Evaluating the Involvement of People With Cancer and Informal Caregivers in the Development Process of a New Set of Quality of Life Questionnaires.Health expectations : an international journal of public participation in health care and health policy · 2025Article
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- Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.Health expectations : an international journal of public participation in health care and health policy · 2024Article
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Authors and funding
5 authors.
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Abstract
introductionTo guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment).
methodsMyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC.
resultsInitially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study.
conclusionThe PPI of two YPCCs as co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. PATIENT OR PUBLIC CONTRIBUTION: YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.
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