"People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public. No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.”
The benefits of patient and public involvement
Improving research quality and relevance
Someone who has experience of using a service or living with a health condition will provide a different perspective on a research topic.
Quality might be improved by
- Making information about the research more appropriate and accessible
- Ensuring that research methods are acceptable and sensitive to the needs of research participants
- Increasing participation
Relevance might be improved by
- Identifying a broader range of research topics or new research questions
- Ensuring that research in the public’s interest and value for money
- Helping to reshape and clarify the research
The National Research Ethics Service (NRES) expects PPI in research to help ensure that research is ethical, relevant and acceptable from a public perspective.
Research ethics committees routinely ask about plans for public involvement in research as part of their assessment process.
It can be particularly helpful to involve patients in developing communication materials, for example, patient information sheets and consent forms.
Most research funding bodies will expect PPI in research projects, or otherwise clear justification for not involving patients.
It is important to demonstrate in funding applications that patient needs and experience have been incorporated into the research project.
"People who are affected by research have a right to have a say in what publicly funded research is undertaken, and how. Public involvement is an intrinsic part of citizenship, public accountability and transparency."
INVOLVE Briefing note three: Why involve members of the public in research? INVOLVE Briefing note three
Public involvement in research applications to the National Research Ethics Service (Tarpey 2011) Public involvement in research applications
Joint National Research Ethics Service and INVOLVE statement. Patient and Public involvement in research and research ethics committees (2009) Patient and Public involvement in committees