Plain English SummaryPatients 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.AbstractPatient and Public Involvement has become an indispensable and expected component of healthcare research in the United Kingdom, largely driven by the National Institute of Health Research and other research funders. Opportunities for patients to become involved in research abound, and many organisations now have dedicated ‘public involvement’ teams. However, its value is often questioned amidst criticism of tokenism and the recognition that a mismatch persists between patient priorities and funded research. Although patients are frequently consulted, evidence that their involvement influences the research agenda remains limited. We propose a novel model that allows patients and the public not only to propose research questions, but to design, initiate and deliver their own research with all the necessary support from research professionals. We demonstrate the feasibility and utility of this approach in reporting the establishment, experiences and progress of the Patient Led Research Hub. Using this resource, patient organisations are now able to initiate and conduct rigorous clinical research unfettered by the constraints of academic or economic agendas.
Aims During this presentation we will share learning from a Wellcome Trust Engagement Fellowship. We will present examples of artsbased public involvement activities, including a sculpture project with young people and a play about dementia. We aim to raise awareness of what public involvement can gain from the arts; stimulate discussion about the pros and cons of different approaches; and discuss how to encourage more creativity within public involvement. Why is it important and to whom? Public involvement has been criticised for a lack of diversity and inclusivity. By diversifying the involvement activities which we offer, we may attract a wider variety of people. Arts based activities also have the potential to facilitate discussion in an accessible, safe and fun way. This session may be of particular interest to people who are planning or facilitating public involvement activities (members of the public and researchers). What difference has, or could, this project make? Throughout the project, both researchers and members of the public have found arts activities stimulating and useful. However people have encountered some practical challenges when running these projects. Specifically, people do not feel they have the necessary skills to plan and facilitate arts activities. I will discuss how we might address that skills gap and invite the audience to suggest what support is needed. What will people take away from session? An understanding of what arts/health collaborations can offer public involvement Access to resources and contacts to support future projects Acknowledgments This work is funded by the Wellcome Trust
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.