Getting Involved
What Is Public & Patient Involvement?
Public & Patient Involvement (PPI)
PPI means that research is carried out WITH or BY patients or members of the public rather than ABOUT, TO or FOR them. To take part in PPI, you do not need to have any knowledge about research, or experience with doing research. The goal of PPI is to improve research and increase the ability of research to make a positive impact.
To learn more about getting involved with the RDCTN PPI Panel, click here.
For resources on partnering with patients, see our PPI Tools webpage here.
Meaningful Involvement
When we speak about PPI, we mean people affected by rare disease having meaningful opportunities to influence decisions in a research project.
This goes beyond participation, which is where you might provide some information for researchers. This could be an interview, filling out a survey, or providing a form of sample (e.g., saliva, blood) for research. It is also different than engagement, where you might attend a talk or exhibit where researchers share their findings. These are one-way conversations, but involvement is where you influence research processes.
Why Would I Want To Do PPI?
It is a personal decision to do PPI, to become what we call a ‘PPI Partner’. PPI embeds partnership between people affected by rare disease and researchers.
You may join a research team for a specific project/trial. You may be recruited for a longer-term PPI initiative e.g. joining a review board or steering committee that oversees or funds several research studies. You may be recruited for a very short and clearly defined piece of work e.g. co-creation of patient materials.
There is no one size fits all approach to this. Discuss with the research team how you want to contribute in a way that will suit your needs.
There are many reasons why PPI is important to health research including:
Quality & Relevance
PPI helps to improve the quality of the research by ensuring that the research being conducted is relevant, asks the right question and meets the needs of the community that it aims to serve.
Acceptability
Proposed research methods should be acceptable to the participants recruited to the study. For example, should participants travel to clinic every week to give a blood sample in addition to their busy appointment schedule or can researchers work this study visit into the patient’s routine appointments?
Feasibility
PPI improves the feasibility of the study by advising on the study design and methods including recruitment e.g. is it realistic to recruit 1000 participants to a trial? As such PPI can help to reduce research waste.
Dissemination
PPI helps to improve how the results of the research are shared, which is called dissemination. Results of the trial should be shared in a way that is easy to understand with those who are most likely to be impacted by the research
Network Partners
