Why patient and public involvement
Involving patients, carers and the public in the prioritisation, development, delivery and dissemination of research helps to ensure that our work matters to those who are most important – our patients. Those with a ‘lived experience’ of a disease, condition or healthcare service are in a unique position to help improve the quality of research through personal knowledge and by providing different perspectives to clinicians leading research. In addition, many research funders now ask for information on patient and public involvement in research as part of their award criteria.
At University Hospital Sussex we recognise that our patients and members of the public can:
- bring knowledge and experience of a particular condition or service relevant to the research topic
- bring views based on their experience of being a participant in research
- bring a lay perspective about studies and their associated documents
- help to improve the design and focus of the research
- advise on ethical issues.
We believe that involving patients, carers and the public in our research leads to better research, clearer outcomes, and faster uptake of new evidence.
The former NIHR Involve gave some examples of how patients and the public could be meaningfully involved in research:
- help select research that is important and relevant
- help researchers design their projects
- help develop understandable information sheets for people taking part in research
- join a research management or advisory group
- train to carry out some of the research (for example interviews)
- help interpret the results of the research
- help make sure the research is reported in understandable ways
- help make sure good research is heard about.
The National Institute for Health Research (NIHR) has a wealth of information about engagement and participation in research, including specific briefing notes for researchers new to public involvement in research and a valuable Public Information Pack written from a patient and public perspective.
The UK Public Involvement Standards Development Partnership (including the NIHR) developed the UK Standards for Public Involvement in Research. These standards provide a framework for good patient and public involvement in research and comprise six strands to be taken in to consideration in NHS research.
How to build meaningful patient and public involvement in research at UHSussex
Research Champions
Our Research Champions can provide helpful input to the development of your study by sharing. Their real-life views and experiences can help to improve the quality of research. For further information about working with our Research Champions please contact : [email protected].
People in Research
People in research national website offers opportunities for patients and the public to become involved in NHS research – create and account and list your requirements to find suitable volunteers to be involved with your research.
Useful resources
What is the Research Engagement Network
Today’s Research is Tomorrow’s Healthcare: that is why UHSussex is proud to be a research-active Trust’
UHSussex Research Engagement Working Group, 2025).
Health research is vital to the development of NHS Services and provision of high quality care for our population and embedding research in the NHS is integral to workforce satisfaction and retention. However, the National Institute for Health Research (NIHR) has indicated that areas of the UK that experience high levels of disease also have the lowest number of patients participating in research and that we lack representation from our diverse society in our research.
In 2022, following the COVID 19 pandemic, NHS England published the document Increasing Diversity in Research Participation and a national plan was launched with the aim of growing local research engagement networks by working with local voluntary, community and social enterprise (VCSE) sector organisations to engage ‘underserved’ communities.
The aims of the Research Engagement Network (REN) are to increase diversity, inclusion and participation in healthcare research and to build long lasting trusting relationships with our communities.
How does the Sussex Research Engagement Network achieve this?
- Through a partnership of local VCSE organisations with expertise and trusted links to local communities.
- Developing a diverse network of community researchers, who contribute their knowledge and lived experiences to inform, conduct and co-design local research.
- Engaging minoritised and under-served groups from areas of deprivation in Sussex to find ways to improve their participation in health and care services and research.
To date, 23 community researchers have engaged with the Sussex Research Engagement Network – conducting interviews and engaging people from their communities in research and conversations around research participation. They have contributed to the development of good practice guidelines/recommendations and ensured the views and needs of underrepresented groups are at the forefront. Sussex community researchers have represented and engaged with members of racially minoritised/global majority communities, lesbian, gay, bisexual, transgender and non-binary people; co-designed mental health research engagement activities; and helped shape the development of cancer research public and community engagement plans for Sussex.
Where can I find out more?
The local Sussex Research Engagement Network is led by our partners at Brighton and Sussex Medical School and the full context of the project can be seen here BSMS – What is a Research Engagement Network?
Hear some of our stories form our Sussex Research Engagement Network Community Researchers.
If you would like to connect with the Sussex REN Team or find out more about the Sussex REN partnership, please email [email protected]