دورية أكاديمية
“Be an ambassador for change that you would like to see”: a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease
| العنوان: | “Be an ambassador for change that you would like to see”: a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease |
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| المؤلفون: | Anna Ambrosini, Ros Quinlivan, Valeria A. Sansone, Ingeborg Meijer, Guus Schrijvers, Aad Tibben, George Padberg, Maarten de Wit, Ellen Sterrenburg, Alexandre Mejat, Alexandra Breukel, Michal Rataj, Hanns Lochmüller, Raffaella Willmann, on behalf of the 235th ENMC workshop study group |
| المصدر: | Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-12 (2019) |
| بيانات النشر: | BMC |
| سنة النشر: | 2019 |
| المجموعة: | Directory of Open Access Journals: DOAJ Articles |
| مصطلحات موضوعية: | Healthcare, Patient engagement, Patient involvement, Neuromuscular diseases, Co-creation, Medicine |
| الوصف: | Background Patient and public involvement for co-creation is increasingly recognized as a valuable strategy to develop healthcare research targeting patients’ real needs. However, its practical implementation is not as advanced and unanimously accepted as it could be, due to cultural differences and complexities of managing healthcare programs and clinical studies, especially in the rare disease field. Main body The European Neuromuscular Centre, a European foundation of patient organizations, involved its key stakeholders in a special workshop to investigate the position of the neuromuscular patient community with respect to healthcare and medical research to identify and address gaps and bottlenecks. The workshop took place in Milan (Italy) on January 19–20, 2018, involving 45 participants who were mainly representatives of the patient community, but also included experts from clinical centers, industry and regulatory bodies. In order to provide practical examples and constructive suggestions, specific topics were identified upfront. The first set of issues concerned the quality of life at specific phases of a patient’s life, such as at the time of diagnosis or during pediatric to adult transition, and patient involvement in medical research on activities in daily living including patient reported outcome measures. The second set of issues concerned the involvement of patients in the management of clinical research tools, such as registries and biobanks, and their participation in study design or marketing authorization processes. Introductory presentations were followed by parallel working group sessions, to gain constructive contributions from all participants. The concept of shared decision making was used to ensure, in discussions, a partnership-based identification of the wishes and needs of all stakeholders involved, and the “ladder of participation” tool served as a model to evaluate the actual and the desired level of patients’ involvement in all topics addressed. A general consensus on the ... |
| نوع الوثيقة: | article in journal/newspaper |
| اللغة: | English |
| تدمد: | 1750-1172 |
| العلاقة: | http://link.springer.com/article/10.1186/s13023-019-1103-8Test; https://doaj.org/toc/1750-1172Test; https://doaj.org/article/9a328ce2a35d47f09c3c4bc026f358dcTest |
| DOI: | 10.1186/s13023-019-1103-8 |
| الإتاحة: | https://doi.org/10.1186/s13023-019-1103-8Test https://doaj.org/article/9a328ce2a35d47f09c3c4bc026f358dcTest |
| رقم الانضمام: | edsbas.AC6B2525 |
| قاعدة البيانات: | BASE |
Full Text Finder | تدمد: | 17501172 |
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| DOI: | 10.1186/s13023-019-1103-8 |