PPI- Patient and Public Involvement in Research
Encouraging patients and the public to be involved in all aspects of the research process.
The NHS constitution states that research is a core part of the NHS and pledges to do everything possible to ensure that everyone is aware of research that is relevant to them. Providing information to inform choices is a major priority for the NHS and it does this in a number of ways relevant to research. The NIHR INVOLVE is a national advisory group which supports greater public involvement in research, which will be "broader, more inclusive and more representative of the population as a whole" . INVOLVE has also produced a simple leaflet. NHS Choices and People in Research also provide information on public involvement in research.
Public Involvement leads to better research
A recent study by INVOLVE - Exploring Impact: Public involvement in NHS, public health and social care research reported that involving the public in health research leads to better designed studies, increased recruitment, clearer outcomes and can save money. The public bring a different perspective, skill set and experience to those of the academic or health professional and their involvement can help ensure that research is focused on what is important, relevant and acceptable to ordinary citizens and users of the health service.
This requires an active partnership between researchers and the public, rather than just using people as passive subjects of research. Involvement may vary across studies and projects, but has the potential to cover the whole research process, for example:
deciding the research topic (something important to the public, not just the researcher)
designing the study (can say what will work best in the real world)
wording of the information leaflets (make completely understandable)
Carrying out the study (interviewing)
Reviewing and dissemination of results (help to raise awareness of the research and results)
"Putting it into practice"
INVOLVE have produced an Resource library for references and resources on public involvement in research. This is a comprehensive database covering general and specific advice for service users, researchers and commissioners. They have also produced a leaflet: Good practice in active public involvement in research and a Public Information Pack (PIP) which goes into detail on how to involve the public, which includes many links to helpful resources and websites.
Contact us to volunteer
- Ring Jane Lambie, Lead Research Nurse, Genetics of Otitis Media study: 07590 355672
- Email: Jane.Lambie@nds.ox.ac.uk
- You can volunteer on any level - help us develop information leaflets, give us your views, fill in questionairres or attend meetings or conferences as a public representative for our study.