At the Irish Cancer Society, when we speak about PPI, we mean people affected by cancer having meaningful opportunities to feed into decisions in a research project. This goes beyond participation, which is where you might provide some information for researchers – this could be an interview, taking part in a focus group, filling in a questionnaire, or providing some form of sample (e.g., blood, tumour) for research. In between participation and involvement is engagement – this is where you might attend a talk for a researcher to share their findings. In this setting, it is one-way conversation: the researcher tells you about what they did, but you don’t have the opportunity to meaningfully feed into the research processes.
Public and Patient Involvement (PPI)
The Irish Cancer Society is committed to putting people affected by cancer at the very heart of what we do.
The Irish Cancer Society is committed to putting people affected by cancer at the very heart of what we do. In keeping with this commitment, we are working to embed Public and Patient Involvement (PPI) in our research processes.
What is Public and Patient Involvement?
Public and Patient Involvement (PPI) refers to research being carried out with or by members of the public and patients, rather than to, about or for them (http://www.invo.org.uk). To take part in PPI, you do not need to have any knowledge about research, or experience with doing research.
PPI is about people affected by cancer having a genuine say in research that impacts them. There are also other ways you can get engaged with research:
Why is PPI important?
PPI is becoming increasingly common in research. The Irish Cancer Society is committed to expanding the involvement of those affected by cancer in the research that the Society funds, and in the funding decision-making process. For example, the vast majority of research projects funded by us must have PPI built into their research plan.
This commitment is reinforced by the Irish Government's National Cancer Strategy (2017-2026) (2), which highlights: “Patient involvement in cancer research improves the relevance of research questions, the quality, acceptability and feasibility of research conduct and the likelihood of uptake of research outputs.”
I've been affected by cancer – why would I want to do PPI?
It is a very personal choice to do PPI, or to become what we call a ‘PPI Contributor’. PPI creates a partnership between people affected by cancer and researchers. It is more than a tokenistic gesture to comply with policy; it can provide a real and substantial benefit to all stakeholders, including both PPI Contributors and researchers.
While not without its challenges, PPI can:
- Promote a sense of empowerment and value among PPI Contributors
- Enhance trust in researchers
- Improve researchers’ insights into their own research area
- Help researchers identify barriers and come up with solutions to research
- Increase trust and acceptability of research findings in the patient community
- Inform the provision, access, and location of healthcare services
- Improve the dialogue between healthcare professionals and patients
- Enhance knowledge and skills from taking part in PPI
How can I get involved?
The Irish Cancer Society research department are continuously seeking PPI representation from individuals affected by cancer. We have a broad definition of what we mean by this. Some examples are below:
Our PPI Contributors reviewing sections of grant applications from cancer researchers that have been submitted to us. This means you will read parts of an application a researcher has written and provide your opinion and feedback on it. What is important here is your lived experience – you are the expert in this, and your insights are vital. You may also be asked to sit on interview panels, where you can ask researchers questions about the research they would like to do. We also have other opportunities, such as going to conferences, talking at events, working with us to change our research process, and so on. It is up to you what you take part in and what you don’t. All PPI Contributors are provided with a fee for their time.
