The MRC Clinical Trials Unit at UCL Patient and Public Involvement (PPI) Group has just released four new films about Patient and Public Involvement in clinical research. These films are available to watch online now.
The films are aimed at answering common questions about Patient and Public Involvement (PPI) in clinical trials, and to give an insight into PPI here at MRC CTU at UCL. The films explore PPI and the practicalities of what being a patient representative involves. They also shed some light why some patients want to get involved in clinical research and how they make a real difference to our research.
Richard Stephens is one of three MRC CTU at UCL patient representatives who appears in the films. For Richard, PPI is about “…encouraging members of the public and patients to get involved in research and [a] willingness to listen to our opinions and our views at every stage of the research process”.
Richard became a patient representative after being diagnosed with cancer and, crucially, taking part in a trial himself. In the films, Richard says of PPI at MRC CTU at UCL: “it’s that openness and willingness to get out into the world that really, really impresses me”.
Dave Ardron is a patient representative on the trial management group for QUARTZ, a lung cancer trial. Dave became involved in PPI after both of his parents were diagnosed with cancer. For Dave, “the patient is there to ensure that the research remains focussed and that it’s answering a question that’s important and that it’s answering it for the right group of patients”. Dave speaks in one of our films about a moment at which he felt he had made a significant difference. He said: “I can remember for a fact that one clinician came up to me after a talk that I’d made at a conference and said that as a result of what they’d heard me say, they were going to open the trial in their centre and if nothing else I’ll not forget that.”
Ben Cromarty, Patient Representative on the PIVOT Trial Steering Committee, sees PPI as particularly important for solving issues around language and communication in clinical trials. In the films, Ben says that: “The patient rep is ideally positioned to make sure that the clinicians are explaining the trial clearly, so that patients can understand what the potential benefits of the trial might be”. When done effectively, this can translate into concrete results: for example in helping to recruit patients to participate in a trial. For Ben, “if that language isn’t right, people won’t come forward to be part of the trial”.
PPI allows researchers to work together with patients, carers and other members of the public to more effectively carry out clinical research. This is a step up from research that is simply done about patients. The PPI activities that we do at MRC CTU at UCL take many forms: from one-off focus groups with members of the public, to patient representatives who help to manage a clinical trial over several years.
Each of the patient representatives interviewed in the films has contributed significantly to the running of the trial they have worked on, and the broader impact of the research findings.