When planning health and social care research in the UK, it is considered best practice to involve patients and the public in the design of the study, and sometimes also in its conduct.
Certain applications available in IRAS (for example review by an NHS Research Ethics Committee (REC)) will ask you for evidence of how you have involved patients and the public in the design of the project and how it helped. This page provides links to information and resources that will help you to involve patients and public effectively, and present this information clearly in your application.
The guidance on this page is split into the following sections:
You should consider involving the public as early as possible in the project design process.
The UK Policy Framework for Health and Social Care describes what researcher, sponsor and funder responsibilities are in terms of public involvement.
The
HRA best practice principles provide practical resources and information about how to get started with involving the public.
On this
resource page, you can find links to information and organisations that can help you plan the best way to involve the public in your project, and identify individual patients, carers or members of the public, patient groups or advocacy organisations to contribute to its design.
You may decide to appoint a public co-applicant for your project. You can find information on this on the
involve website.
For studies led from Northern Ireland, the Health and Social Care (Reform) Act (Northern Ireland) 2009 places a statutory duty to involve and consult service users and carers in the planning and provision of care, or changes to the way care is provided. You can find guidance specific to public involvement in Northern Ireland on the
HSCNI website. Health and Social Care Northern Ireland also provide
support and training for researchers wishing to involve the public in their research.
In Wales researchers are supported by a
Health and Care Research Wales Public Involvement team which includes a researcher request for public involvement support.
Researchers in Scotland can access support from the
Patient and Public Advisory Service, provided by the Academic and Clinical Central Office for Research and Development (ACCORD).
In England the
Health Research Authority Public Involvement team can be contacted for advice and support.
For NHS/HSC sponsored projects, your local R&D office may also be able to provide support with public involvement activities. You can look up R&D office contact details
here.
REC approval is not required for the involvement of the public in the design of research studies. For studies where patients, carers or members of the public will be involved in its conduct, any potential ethical issues this might raise will be considered as part of the REC review of the study.
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There are several questions in the REC application form specific to public involvement. At each of these questions you will find question specific guidance (accessed via the green ‘i’ buttons) which provides advice on the type of information you should enter.
The HRA website provides
details of the questions relevant to public involvement. We recommend that you review each of these questions and their associated guidance before you begin filling in your application as this will help you to plan your responses more effectively and ensure that information is not duplicated unnecessarily. You do not need to complete each question in your application in sequential order. Asking the patients or other members of the public you’re working with to review this information in your application may help to check that you’ve described their involvement accurately. It may also be helpful for an involved patient or other member of the public to be one of the people who attends the REC meeting.
A
joint statement from the HRA and INVOLVE, which is intended for researchers who will be submitting applications for ethical review, provides clarity and guidance on public involvement in research and the requirements of REC review.
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Page last updated: 20 January 2021