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 the Research Champion Lead Linda Foulkes.
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.