Putting it into Practice

Title: Inverting the patient involvement paradigm: defining patient led research.
Author: Mader L, Harris T, Kläger S, Wilkinson I and Hiemstra T.
Date Published: 2018
Reference: Research Involvement and Engagement 4:21
Are service users or carers authors: No/Not Known

Abstract: Patients usually understand their disease and lifestyle needs better than many medical professionals. They also have important ideas about what research would be most beneficial to their lives, especially on how to manage symptoms in a way that improves daily quality of life. In the UK, the National Institute for Health Research has recognised the value of patient insight, and now requires researchers with public funding to involve patients and the public throughout the research process. There are many opportunities for involvement, but these generally focus on improving study design to ensure the trial is acceptable to participants. Some programmes work towards setting research priorities as important to patients, public members, and medical experts, but due to the complexity and cost involved in running clinical trials, the majority of research originates with the pharmaceutical industry or academic institutions. There is a clear mismatch between research ideas that patients prioritise (quality of life), and those actually investigated (drug development). The Patient Led Research Hub (PLRH) is a new initiative hosted by the Cambridge Clinical Trials Unit. The PLRH supports research ideas as proposed by patient organisations, providing resources and expertise in research design and delivery. The PLRH aims to co-produce any technically feasible project, regardless of disease or symptom focus. The proposing patient group maintains ownership of the project with an active role in study management. This method of research has proven to produce credible research studies that are of direct relevance to patients.

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Categories: journal article
service users and carers
research commissioners
relevant to all service users
identifying and prioritising topics
designing of research

Date Entered: 2019/01/08

Date Edited: 2019/01/08

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