دورية أكاديمية
What really is nontokenistic fully inclusive patient and public involvement/engagement in research?
| العنوان: | What really is nontokenistic fully inclusive patient and public involvement/engagement in research? |
|---|---|
| المؤلفون: | Andrea Hilton, Molly Megson, Aidin Aryankhesal, Jessica Blake, George Rook, Anne Irvine, Jinpil Um, Anne Killett, Ian Maidment, Yoon Loke, Jayden vanHorik, Chris Fox, TIMES programme team |
| المصدر: | Health Expectations, Vol 27, Iss 2, Pp n/a-n/a (2024) |
| بيانات النشر: | Wiley, 2024. |
| سنة النشر: | 2024 |
| المجموعة: | LCC:Medicine (General) LCC:Public aspects of medicine |
| مصطلحات موضوعية: | epistemic justice, inclusivity, patient and public involvement and engagement, Medicine (General), R5-920, Public aspects of medicine, RA1-1270 |
| الوصف: | Abstract Patient and public involvement and engagement (PPIE) is critically important in healthcare research. A useful starting point for researchers to understand the scope of PPIE is to review the definition from the National Institute for Health and Care Research (NIHR) as, ‘research being carried out “with” or “by” members of the public rather than “to”, “about” or “for” them’. PPIE does not refer to participation in research, but to actively shaping its direction. The ‘Effectiveness of a decision support tool to optimise community‐based tailored management of sleep for people living with dementia or mild cognitive impairment (TIMES)’ study is funded through the NIHR programme grant for applied research. TIMES has thoroughly embraced PPIE by ensuring the person's voice is heard, understood, and valued. This editorial showcases how the TIMES project maximised inclusivity, and we share our experiences and top tips for other researchers. We base our reflections on the six key UK standards for public involvement; Inclusive Opportunities, Working Together, Support and Learning, Communications, Impact and Governance. We present our work, which had been co‐led by our PPIE leads, academics and partners including, together in dementia everyday, Innovations in Dementia, The UK Network of Dementia Voices (Dementia Engagement & Empowerment Project) and Liverpool Chinese Wellbeing. We have a Lived Experience Advisory Forum on Sleep, which includes people with dementia, family carers, representatives of the South Asian Community and the Chinese community. |
| نوع الوثيقة: | article |
| وصف الملف: | electronic resource |
| اللغة: | English |
| تدمد: | 1369-7625 1369-6513 |
| العلاقة: | https://doaj.org/toc/1369-6513Test; https://doaj.org/toc/1369-7625Test |
| DOI: | 10.1111/hex.14012 |
| الوصول الحر: | https://doaj.org/article/4832514cbb49448084e3f5af5ceed979Test |
| رقم الانضمام: | edsdoj.4832514cbb49448084e3f5af5ceed979 |
| قاعدة البيانات: | Directory of Open Access Journals |
Full Text Finder | تدمد: | 13697625 13696513 |
|---|---|
| DOI: | 10.1111/hex.14012 |