Get Involved

Being a participant isn’t the only way a member of the public or a patient can volunteer to get involved in a clinical trial. They can also become a PPI contributor.

Public and Patient Involvement (PPI) is an approach to research which makes sure that members of the public and patients are involved with the design, delivery, and dissemination of research throughout the project.

Patients are experts about their conditions because of their lived experience, and have valuable information that doctors, clinicians, and researchers need. A PPI contributor is a person who volunteers to bring their voice and lived experience to the table when researchers are conducting research. They do not take part in the study like a participant does; for example they do not take the treatment being studied. Instead, their job is to give their opinion to researchers about how the study is being done. This makes sure that the experience of patients is being taken into account at every stage of the trial.

PPI contributors can guide and influence              

• what is researched (the research question)
• how studies are designed
• the outcomes which are measured
• how research is conducted
• how the results of the research are shared
• how results influence policy and practice

Some examples of what a PPI contributor may be asked to do in a clinical trial include

• Help to set the question of a trial
• Co-design the clinical protocol
• Be a member of the trial steering committee
• Inform the creation of information leaflets and other study materials
• Help to find participants
• Give guidance on solving problems
• Co-author publications or lay summaries and help the research findings reach a wider audience

The goal of PPI is to ensure that people who are going to be affected by research outcomes have a say in what and how research is done. Members of the public and patients provide alternative views to that of researchers and doctors which enhances the quality, relevance and acceptability of research to all stakeholders. Good PPI believes in the public right for accountability in publicly funded research and increases the credibility of research conducted. To ensure these values are met, it is important that PPI is not tokenistic, meaning that the views of PPI contributors are respected and considered throughout the study as an equal partner.

PPI can be ‘measured’ on a spectrum of involvement. Best-practice PPI leads to greater ownership of the research on the part of members of the public and patients, moving the relationship with researcher from being informed/consulted to closer involvement and partnership.

Because members of the public and patients know what is most important for patients, their involvement goes to improve their experience during a trial. Trials that include PPI are more relevant and have a higher quality because they are designed to meet patients’ needs and priorities. They can also have better recruitment and retention of participants and the results of the research will be spread more broadly, helping to improve the trial’s impact.