The number of resources for public involvement in research has increased, both those provided by INVOLVE, those available through other National Institute for Health Research (NIHR) funded initiatives, and through the Research Councils and various research charities. There is now a greater understanding of the importance and contribution that public involvement can make to research and there are far more organisations and individuals supporting public involvement.
Members of the public (including patients, potential patients, carers and health advocates) are getting involved and fulfilling crucial roles throughout the whole research process.
Patient and public involvement (PPI) in research is research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.
The Engagement and Diffusion team have put together some useful links to help you engage and involve patients and members of the public in your research:
- National Standards for Public Involvement in Research
- Research Design Service London
- People in Research
- Queen Mary centre for public engagement
- Research involvement and engagement
- Engagement and Diffusion Unit - Barts Health
- Make a Difference - a PPI Blog
- For more information
The public involvement standards aim to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored. They are intended to encourage approaches and behaviours which will support this: flexibility, partnership and collaboration; a learning culture; the sharing of good practice; effective communication.
More about the national standards for public involvement in research can be found here.
INVOLVE supports active public involvement in NHS, public health and social care research. It has numerous resources for researchers, including links to publications, databases and other resources relating to public involvement in research including:
- This online resource hosts the INVOLVE briefing notes for researchers on how to involve members of the public in research. It includes detailed information on public involvement, case studies showing how the public has been involved in research projects and templates of useful documents.
- A Plain English summary is a brief summary that has been written for members of the public, rather than researchers or professionals. It should be written clearly and simply, without jargon and with an explanation of any technical terms that have to be included. Find advice on making sure your research study has a clear and concise Plain English summary here.
- Payment and Recognition for Public Involvement: there are a number of ways to recognise the contributions of members of the public who are actively involved in research. Link to guides and practical advice on payment and non-monetary methods for recognising the time, skills and expertise provided by members of the public here.
- Learning for Involvement: this is a single searchable site that has recently been launched, where details of training opportunities and learning resources can be found, with the ability to share and access resources developed by others. This is a resource for researchers, public involvement leads and members of the public that can be accessed from here.
- Public reviewing with the National Institute for Health Research (NIHR): An interactive course for new and experienced reviewers of health and social care research is now available, which has been produced by a team of public reviewers and patient and public involvement professionals with the NIHR. The course covers reviewing in all contexts for NIHR research funding programmes, plus the skills and activities required at different levels and stages of research. Visit the INVOLVE website here to see what is available. Researchers may find this particularly useful when writing research funding applications; it can be used as a tool to understand how to get your Patient and Public Involvement right the first time!
- Involve also has examples online to illustrate how researchers are involving members of the public in their NIHR funding applications and explore the views of the researchers on the impact public involvement has had on the development of their research funding application.
- The NIHR has additionally published PPI case studies - Senior Investigators: Leaders for Patient and Public Involvement in Research which can be accessed here.
The NIHR Research Design Service (RDS) network provides help for researchers to prepare proposals for submission to NIHR and other national, peer-reviewed funding competitions for applied health or social care research by providing expert advice on research design and methodology.
The RDS also offers bespoke advice and support regarding how to embed Public Involvement in research, information and guidance, including information on relevant groups and networks who may be interested in collaborating.
Please follow these links for further information:
RDS London also produces a monthly e-bulletin with their latest news and events. To subscribe, please click here.
People in Research enables researchers to advertise opportunities for the public to get involved in research, such as joining a patient panel group or taking part in a workshop.
In 2012 Queen Mary set up the Centre for Public Engagement, with the purpose of advising and supporting engaged activity, working to embed public engagement further within the university. Their aim is to build on Queen Mary’s strong history of public engagement to help support all staff in developing new activity and sustaining and strengthening existing projects.
The Centre for Public Engagement runs regular fortnightly public engagement surgeries where you can pick the teams' brains about projects, funding, logistics and more. For further information visit The Centre for Public Engagement website here.
Research Involvement and Engagement is an interdisciplinary, health and social care journal focussing on the patient and wider involvement and engagement in research, at all stages. The journal, which is free with open access, is co-produced by all key stakeholders, including patients, academics, policy makers and service users. Researchers can sign up for article alerts or submit their own manuscripts here.
We support research staff by:
- advising on the possible patient involvement at the point grant applications are made
- providing a forum for sharing best practice and problem-solving: Barts Health
- Patient and Public Involvement in Research (PPIR) Working Group
- providing links to community organisations and local residents who want to get
- involved in healthcare research
- organising research dissemination events, both at a hospital and in the community.
Derek Stewart is a patient advocate, blogger, facilitator and speaker who has been writing his Make a Difference blog since 2012. He wants to give people a voice after his own experience with throat cancer. The blog covers topics such as how to effectively involve patients and the public in Research, finding people who may want to be involved in Research and reviews of recent PPI workshops that Derek helped facilitate, funded by the Wellcome Trust, supported by UCLP and hosted by Barts Health and QMUL. You can read the blog here.
Engagement and Diffusion
Barts Health NHS Trust
Newham University Hospital
London, E13 8SL