Learning from experience:
Patients are vital to advances in tackling cancer
A radical shift is taking place in cancer research.
What was previously considered researchers' and clinicians' territory is now welcoming new perspectives: those of people with experience of cancer.
Involving the community that benefits from the work may sound obvious, but patient involvement in cancer research has only recently become an accepted priority.
“If we want a new scientific discovery or new treatment to be accepted, we have to explain it properly and build trust with the people who are going to use it. It has to be designed specifically for them – with their active input,” says Dr Rhys Grant, engagement lead for the CRUK Cambridge Centre, adding: “I think that fact became very clear during the COVID pandemic.”
“The interesting thing is how patients’ experiences diversify our perspective. They help to direct our research priorities,” adds Cherry May Sanchez, a CRUK Senior Research Nurse who leads patient and public involvement for Cambridge’s Experimental Cancer Medicine Centre.
Patient involvement is now an integral part of cancer research and in Cambridge, patients are involved in every single step of the process – from planning research priorities, to developing clinical trials, to designing a new Cambridge Cancer Research Hospital.
If cancer research is to ultimately benefit patients, patient involvement is vital.
“There’s no doubt that patient input is changing things for the better.”
Fiona Barve
Fiona Barve was diagnosed with ovarian cancer in 2017 and treated at Addenbrooke’s hospital; two years later she was declared cancer free. She continues to receive a drug as part of a clinical trial, which aims to maintain this situation. Since 2019 she has also been part of a Patient and Public Involvement (PPI) group and involved in activities such as raising awareness of ovarian cancer through the media, and planning new research projects.
She’s currently one of two patient co-applicants on a large grant application in preparation to Cancer Research UK, requesting funds for a clinical trial.
“This was the first time I’d heard of patients being co-applicants on grants,” she says, adding:
“My aim is to make the trial better for the patients. Researchers aren’t living with the disease - we see things in a different way.”
Fiona’s involvement in research even before it has begun means she can influence the way clinical trials are run, using her own experience as a patient to point out where the plans aren’t realistic – having to attend daily scans at the hospital, for example, or invasive tissue biopsies that will be of no personal benefit to the patients involved.
“Researchers can be so focused on getting results that I think they can sometimes forget what it’s like to be ill.”
She adds: “They want patients to do all sorts, but not all patients are well enough or feel happy with the extra load. It’s important to listen to our advice.
“It’s fantastic to work with such enthusiastic researchers, and I enjoy being involved in cutting-edge science and feel I do give valuable input. Ultimately the whole cancer research process is to help patients, so it should be patient-centred.”
She’s also involved in workshops to evaluate new ideas that researchers want to submit for funding. These give patients the opportunity to comment on, for example, how they feel about their anonymised health data being included in a platform built by a company outside the hospital – feedback that is then addressed before projects move forward.
“I do it because I have a daughter who could potentially end up with ovarian cancer, and it would be much better if she doesn’t have to go through what I did. But she’s not going to be the only woman benefitting from this of course – there will be thousands of others.”
“We’re the only people who actually know what it’s like.”
Hilary Stobart
Hilary Stobart was diagnosed with breast cancer in 2009. After recovering from surgery, her surgeon asked if she would consider joining a clinical trial for radiation therapy. Researchers wanted to know whether partial radiotherapy - focusing treatment on a smaller volume of the breast - would be equally as effective as treating the whole breast, but with fewer side effects. Initially reluctant, she decided to go ahead after a research nurse told her that the trial was part of a large national study that was gradually revolutionising radiotherapy.
“When you’re first diagnosed with breast cancer, however altruistic you are, doing a clinical trial isn’t really your first thought.”
Hilary adds: “I certainly had qualms about agreeing to less treatment when I knew people who’d had radiotherapy that had worked.”
“But cancer treatment wouldn’t be what it is today without research – we’d still be at the stage of every breast cancer patient having chemotherapy as part of their treatment but we now know many don’t need it. These advances can’t happen without patient involvement. And I wanted to give something back.”
Around ten years after her treatment (the surgery and radiotherapy were successful), the study results were published: partial radiotherapy treatment is just as effective for many breast cancer patients. The approach is now incorporated into the National Institute for Health and Care Excellence (NICE) guidelines, and Hilary feels proud to have played a part.
She has gone on to use her experiences to contribute to many other cancer studies – helping simplify the wording of patient information sheets, and with trial design and management, for example.
The aim is to make cancer research as patient-friendly as possible.
In one trial design, researchers wanted to give each patient a mammogram immediately after radiotherapy. “I sat there and winced when I heard that,” says Hilary. “When you’ve just had radiotherapy you get a lot of soreness. I told the researchers that having a mammogram straight afterwards would cause significant pain – so they cut it out of the study and did something else.”
“I’m different to the researchers - I’ve been there and had the treatment, which means I’ve got something useful to say.”
She adds: “Cancer clinical trials are so important – they’re almost part of treatment really.”
Hilary is a member of the Patient and Public Involvement Group for Cancer Research UK’s radiation research network centre of excellence in Cambridge (CRUK RadNet Cambridge) – for which new members are always wanted. She’s also a patient advocate in the Lancet Breast Cancer Commission to tackle global inequalities in breast cancer diagnosis, and for the Cambridge Experimental Cancer Medicine Centre’s early phase clinical research.
“It’s not just a tick box - it makes sense to involve patients.”
Fiona Carey
Fiona Carey was diagnosed with kidney cancer in 2001. After two large operations she was cancer-free for seven years, before secondary cancer appeared in her pancreas - requiring further surgery. Following a long recovery, she was invited to an event at Addenbrooke’s hospital to talk about her experiences as a patient. Afterwards she was invited to join a new Cancer Patient Partnership Group (CPPG) being set up by the oncology staff to improve cancer services.
“I put my hand up and that was that,” says Fiona. "For me it’s about a real passion for patients to be involved.
“Anyone with a long-term condition will usually have a good idea of the kind of services they need, and how they want them to be delivered.”
“I think at first the clinicians were scared of us – as if we’d just come along and whine about our symptoms. But they quickly realised that we could help to redesign services and enable a better experience for patients.”
Over a decade later, Fiona is now Co-Chair of the Patient Advisory Group for the Cambridge Cancer Research Hospital, scheduled to open on the Cambridge Biomedical Campus in 2028.
“By the time the idea for the cancer hospital started to become real, the oncology department had realised how valuable patient input was. So they’ve involved us in the hospital design from the start, alongside the professionals,” says Fiona.
The group challenged a part of the planned layout, for example, where a changing room was across the corridor from an examination room.
“We all know about hospital gowns – the whole thing is really awkward, and no-one wants to have to walk across a corridor worrying that their bum is hanging out,” says Fiona. Now the layout of these rooms has been changed to remove that problem.
From a demand for healthy meals cooked on-site, to the need to see trees and sky from every room, these patients want to make being in hospital a better experience for other patients.
“The patient group spent a lot of time thinking about what it would feel like that first, frightening time you go into Oncology. We wanted it to feel safe and calm, but also to ooze competence, so you could feel the world-class research going on and be confident about your treatment,” says Fiona, adding:
“Patient involvement is fundamentally about improving the experience for cancer patients, and we’re really making a difference."
"It makes sense for us to be in the room – you wouldn’t build a Cineplex without talking to people who are going to use it!”
Rhys and Cherry May are recruiting patients to help tackle cancer in all sorts of other ways too: helping to plan events, rewrite websites and patient information sheets, advise on patient recruitment, and speak at conferences. Patients are even being encouraged to suggest, and lead, their own research projects - bringing in the appropriate researchers to help them.
“Until last year we’d never had patients come and talk to the public at our Cambridge Festival events before – but when we explained what’s involved many jumped at the chance,” says Rhys.
The next challenge is to recruit patients who represent the broad experiences and demographics of the East of England population as a whole, including various minority groups.
“We’re aware that we need a more diverse patient representation,” says Cherry May, “and we’re actively trying to recruit people from traditionally under-represented groups, by holding events in community settings like the Cambridge Central Mosque, Wintercomfort for the Homeless, and Cambridge United Football Club.”
“It’s clear that patient-centred research benefits everyone involved. There's always something researchers overlook because they don't have that holistic experience,” says Rhys, adding:
“If a patient wants to be involved, we’ll find a way for them to be involved.”
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