Who should I involve in my research and why? Patients, carers or the public?

被引:21
|
作者
Kristina Staley
Jim Elliott
Derek Stewart
Roger Wilson
机构
[1] TwoCan Associates,
[2] Independent Advocate for Patients in Health Research,undefined
[3] Patient Advocate,undefined
[4] NCRI Consumer Forum,undefined
[5] Sarcoma Patients Euronet,undefined
关键词
Patient public involvement;
D O I
10.1186/s40900-021-00282-1
中图分类号
学科分类号
摘要
Patient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers are therefore keen to involve patients, carers and public in their work, but are sometimes uncertain about who to involve. Some confusion may arise from the terms used. The UK’s catch-all term ‘patient and public involvement’ suggests this is a single activity, that perhaps both ‘patient’ and ‘public’ input are needed, or that either will do. The terms ‘patient’, ‘carer’ and ‘public’ have been defined, but are not used consistently. In fact there are many different contexts for involvement and many different kinds of decisions made, which then determine whose input will be most valuable.
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