What do we mean by Patient and Public Involvement in Research?
Patient and Public Involvement (also known as user/lay involvement) in research is the formation of an active partnership between patients and/or public and researchers which enables:
- Prioritisation of studies
- Design and management of studies
- Data collection and analysis
- Dissemination of findings
Thus PPI goes beyond simply having patients/members of the public as research subjects. By patients and the public we mean:
- People who use, or have used, health or social care services
- Informal carers and families
- Members of the general public
- Organisations who represent users of NHS services and user groups
Why is patient and public involvement important?
The contributions of patients are considered valuable, providing alternative views from those of the research team or NHS staff. Patients are able to make judgements based on their understanding of their condition and may have different aspirations and thoughts about health outcomes that health care professionals and researchers may not have considered. Increasingly funders of research now require PPI as a condition of funding.
When should I involve patients and the public in the research development process?
Although PPI can be incorporated at different stages of the process it is generally best to develop links with potential PPI collaborators at the earliest stages of the project. RDS London has an Enabling Involvement Fund available to researchers applying for funding. The fund is intended to get patients and the public involved in research at an early stage where they can be influential and have positive impacts. The National Institute for Health Research (NIHR) suggest five key stages in the research process where involvement could take place. These are:
- Design of the research
- Development of the grant application (pre-protocol work)
- Undertaking/management of the research
- Analysis of data
- Dissemination of research findings