Why patient involvement is so important in bowel cancer research
At Bowel Cancer UK, we support outstanding research with the aim of achieving earlier diagnosis. Our Research Team — Lisa Wilde, Reena Morjaria , Ruby Osborn and myself, (Katie Musialowski) — are committed to making this happen through the funding of innovative research projects. These sort of research ideas show originality and creativity. They often involve methods and perspectives from different areas of science and many use cutting-edge technologies. Their unique approaches have the potential to bring about significant change for those with bowel cancer, and their loved ones.
However, these projects must offer more than just great science. A state-of-the-art screening tool is unlikely to make a difference if patients find it invasive, or culturally unacceptable. Similarly, it’s doubtful that a cutting-edge procedure for diagnosis will deliver meaningful change if patients are put off by the complicated aftercare, lengthy recovery or multiple follow-up appointments. The projects we fund need to address the real-life issues and priorities of our community. For us, the best way to ensure this, is by involving people with lived experience in the research process.
But what does this mean in practice? It’s important to highlight that involving people in research is about working directly with them and allowing their lived experience to shape research and its outcomes. This is different from simply encouraging them to join research studies as participants. This is often called ‘Patient and Public Involvement’ or ‘PPI’. One way in which we‘ve supported PPI is by including a Lay Review Panel in our decision-making. The panel members have personal experience of bowel cancer and each year, they review the applications we get for research funding and help us select which ones are successful. They tell us whether they think the proposed research ideas are relevant for patients, and whether the researchers have adequately considered patients in the design of their projects. By seeking the panel’s opinion on the applications we receive, we can make sure we’re funding research that’s focused on what really matters to those affected by bowel cancer.
The positive impact of this involvement doesn’t end there. The panel’s insights may allow them to spot things that researchers haven't, inspiring ideas that can result in more innovative science. It also means that the findings of our funded research are more likely to be accepted and implemented in the real-world. Additionally, by ensuring that those affected by bowel cancer are at the heart of our work, it builds trust with our supporters, as well as making our funding process more transparent and accountable.
We also support PPI by encouraging researchers to seek the input of our Research Network, especially if they’re applying for our research funding. Like our Lay Review Panel, the Research Network are a group who have personal experience of bowel cancer. Our Research Team connect members with researchers, giving them the opportunity to improve research in a variety of ways. Researchers may need members to take part in a focus group where they’ll discuss which outcomes a research project should prioritise. They might be asked to review the participant information for a medical study, or the communications that a researcher plans to use to inform the public of their findings. Members might even become involved in the management of a project from start to finish. Whatever the activity, the Research Network pass on their experience to shape research in a way that brings it closer to meeting patient needs.
We’re hoping that this year’s Bowel Cancer Awareness Month will spark even more PPI-driven change in bowel cancer research. If you know a bowel cancer researcher, please encourage them to connect with our Research Network. Listening to those with lived experience will lead to better science, better outcomes and better support for our community.
Written by Katie Musialowski
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