We want to involve the public, who are not researchers, in our research. The public and patients already take part in research, but usually as participants in a study, where researchers collect data about them and their health. In this Network, we want the public to help shape and guide our research. We want to create an active partnership between the public and researchers, with the voice of the public contributing throughout the research process.
Public and patient involvement (PPI) occurs when the public/patients work in partnership with researchers in setting priorities for research, in planning and managing research studies, as well as in summarizing, distributing, sharing, and putting results into practice. Public involvement in research is perhaps best defined as:
research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them
This definition is from the INVOLVE organisation, which leads PPI in research in the UK.
PPI is an important step in ensuring that the real life experiences of patients are considered when decisions are being made about what research to do, what are the most important questions to be answered, how to design studies that patients are more likely to both take part in studies and also to stay involved in until the end.
What difference can I make?
By getting involved in research, you help us to:
- Know what aspects of a disease or a treatment matter most to patients and their families, so that we know what we should be trying to improve
- Plan our research so that patients will be happy to participate in our studies and are more likely to stay involved in a study right up to the end
- Develop new treatments that patients are more likely to follow
- Inform other patients about research that is relevant to them
- Communicate our results to other patients
- Bring about change in the healthcare that is delivered in Ireland and worldwide
Having the public and patients involved as partners in research can lead to the development of treatments that better meet people’s needs and are more likely to be put into practice. Read about our partnership group and Get involved if you are interested!
What would I have to do?
There are many different ways in which the public/patients can partner with researchers. Imagine we are running a trial comparing Drug A to Drug B for a sore throat. Here are some ways in which a member of the public can help researchers:
- Tell us: What is the most important thing a drug should aim to improve? What is the worst thing about having a sore throat?
- Tell us: What is the best way to contact patients, to tell them about this study and ask them to take part?
- What is your opinion: Would a parent enrol their sick child in a research study that involves additional injections?
- We usually give participants a written explanation of a study – it is very helpful when a member of the public reads what we have written and tells us if what we have written makes sense or what needs changing
- Communicate for us: you might help to make or to review a YouTube video explaining a study
- Help manage a study: for example, sit on a steering committee that meets a few times during the study to make sure that the opinion and view of the public helps guide the study