By Sam Alexandra Rose
Our Patient and Public Involvement Manager Sam blogs monthly for Bowel Research UK, sharing her experiences of bowel cancer and Lynch Syndrome.
Happy New Year! As 2024 rubs its eyes and stretches (and so do I), I wanted to take a little time to reflect on the Patient and Public Involvement (PPI) work we supported at Bowel Research UK last year. 2023 was a year of big changes in this department. It was particularly exciting for me as it was my first year in the job and my first experience of hearing all about the fascinating (and I don’t use that term lightly) research everyone is doing. So let’s dive into a recap of PPI in 2023!
Focus groups and PPI support
Here are just some of the PPI projects we supported:
- Diverticular disease Priority Setting Partnership
- We are excited to be working with Guts UK on a Priority Setting Partnership (PSP) for diverticular disease. The PSP aims to discover the top ten research priorities for diverticular disease that matter to patients, carers, and healthcare professionals.
- Faecal incontinence Priority Setting Partnership
- I am also representing Bowel Research UK on the steering group for a PSP on faecal incontinence, led by the Pelvic Floor Society.
- AMELIE
- We continued to support the AMELIE project (Anchored Muscle cELls for IncontinencE). The study is looking into whether cell therapy can restore muscle function for people who have injured their anal sphincter during childbirth, surgery or trauma. Find out more here.
- AI in colonoscopy
- We co-ordinated two focus groups for Odin Vision this year to gain patient feedback on their research into using artificial intelligence in colonoscopies. I also interviewed Alicia Toon from Odin Vision on an episode of our podcast “Can I Butt In?” where we spoke all about the project. You can listen to it here.
- Gut permeability
- We co-ordinated a focus group for researchers at Imperial College London who are developing a new wearable sensor to measure gut permeability or “leakiness” in people with Crohn’s disease.
- AI in MRI for rectal cancer
- We supported a focus group for researchers at Imperial College London and University of Oxford looking into the use of artificial intelligence to map lymph nodes in MRI scans for patients with rectal cancer.
- REARSS
- To finish off the year, we put together a focus group for researchers looking into how changes could be made to anorectal and perianal surgery to make these procedures more environmentally friendly.
#auguts
Our annual #auguts campaign brought together pairs of patients and researchers to talk about bowel conditions and symptoms, and the research being conducted around them. You can watch the videos, read the stories, and even take a quiz over at the #auguts 2023 hub.
Big Bowel Event
The annual Big Bowel Event took place in September after a hiatus, and this time we gathered virtually to hear from patients and researchers about a range of studies. If you missed any of it, you can find the recorded sessions on YouTube.
New patient stories
You may have seen our two most recent patient stories on our website. Lisa kindly shared her experiences of Chronic Intestinal Pseudo Obstruction (CIPO) and Mesenteric Plexitus, while Sharon told us about her pelvic exenteration surgery. Sharon was also one of our first guests on the podcast, where she appeared with empty pelvis syndrome researcher Charlie West.
Can I Butt In? podcast
Speaking of the podcast, “Can I Butt In?” began in late September and we’re eight episodes into it at the time of writing. I’ve had the privilege of speaking to a variety of patients and researchers about how bowel cancer and bowel disease issues interact with visual impairment, working life, bipolar disorder, the food we eat, and more. You can find all of the episodes here.
Patient co-applicant training
We hosted our first patient co-applicant training recently! Professor Robert Arnott, Mr Matt Lee and myself led this online session to introduce members of the public to how they can become co-applicants for research studies.
What Our Guts Tell Us poetry book
In another first for BRUK, we launched a poetry book What Our Guts Tell Us. The book contains poetry and artwork from 18 bowel cancer and bowel disease patients and their families. We hosted a virtual book launch where some of the contributors read their poems or discussed their artwork. You can watch the recording here and buy the book in paperback or as an ebook.
…and more!
As well as all of this, I appeared on Sarah McLusky’s podcast Research Adjacent to discuss my role at BRUK and how I got here. I also spent some time reviewing and enjoying Dr Anisha Patel’s new book everything you hoped you’d never need to know about bowel cancer. We’re also involved in more projects than I have room to mention here!
What next?
What lies ahead for PPI at Bowel Research UK in 2024? Join the PaRT network to be the first to know and get involved! PaRT stands for People and Research Together, and it’s a community of people with bowel conditions who we reach out to for involvement in research, including focus groups, surveys, documentation reviews, and more. We send out a newsletter every month detailing new opportunities to help improve research by providing your valuable views as someone with direct illness experience. Plus, our online events and activities aim to bring the PaRT network together, amplify patient voices, and highlight new research. There’s never any obligation to take part in anything – it’s always up to you what you would like to commit to – but by becoming a member of the PaRT network you’ll hear about all of the different opportunities. Sign up here!
We also invite researchers to join the PaRT network by getting in touch to discuss how we can help you to incorporate PPI into your studies. We look forward to connecting researchers and patients in 2024 to continue this valuable work to help end bowel cancer and bowel disease.