To mark World Cancer Day, patient advocate Richard Stephens shares his experience about the importance of incorporating good public involvement in cancer research. Richard works with researchers and funders to help improve their study design. Over the last 20 years he has worked as a patient advocate with the National Cancer Research Institute, Cancer Research UK and Cancerbackup (now part of Macmillan Cancer Support). Richard has also worked with the HRA to train Research Ethics Committees (RECs) on the importance of good public involvement.
Richard Stephens, Patient Advocate
My involvement as a patient advocate in health research started in 1998, when I was a 39-year-old newly diagnosed cancer patient. I had Hodgkin lymphoma and was offered the chance to take part in a clinical trial. My mum was a nurse and she had always told me “If anyone offers you a clinical trial you should take it!” She said patients on trials were really well looked after. Plus like many patients, once I’d had my diagnosis I wanted others to benefit from whatever was about to happen to me, so I said yes immediately.
My first trial involved testing a new chemotherapy drug against standard treatment. I asked to be “randomised” to the new drug. I hadn’t understood what was meant by ‘randomised’ trial. My consultant told me later that she thought I had been joking when I’d asked for the new drug. But the randomisation did put me on it anyway, which was what I thought I’d consented to….
My own misunderstanding made me wonder why patients weren’t involved in writing the information that would be given to other patients. Back then, hospitals wrote their own patient information sheets. Now they are written by the research team, usually involving at least one patient as good practice. They are then checked and approved by the REC, and the same information is used at every hospital taking part in the trial. But for patients to check patient information properly, we need to see the protocol. The best way to be involved is to help design the protocol and then write the patient information from there.
The first trial I was on proved inconclusive and I was invited to take part in a second trial. This time the researchers were looking at PET scans to see if they would be useful in detecting blood cancers. These are now common place in treatment for Hodgkin lymphoma, and the drugs I had are also standard treatment worldwide. I am proud of helping those improvements to happen, but my own results were still inconclusive. However it all took so long that my oncologist decided that the cancer had probably gone. “We can’t find it,” was the closest I ever came to “all clear.”
Much of the information that I found came from Cancerbackup (now part of Macmillan Cancer Support) and I joined their patient advisory group. Half a dozen lovely ladies of a certain age plus me. I have never eaten so much excellent homemade cake. We helped carry out some research on the different ways the Cancerbackup helpline was used by male and female patients and carers, which produced my first co-authored academic publication.
When the National Cancer Research Institute was set up in 2000, Cancerbackup nominated me to sit on the Board subgroups. More cake! Since then I’ve sat on various committees and worked with lots of different researchers and organisations. I’ve worked with the HRA to train staff and RECs about the importance of good public involvement and recently co-led a workshop on improving participant-facing information in commercially-funded studies.
Patients should not only be at the centre of trial design, we should be present throughout the whole research process. In the UK we are ahead of any other country in the world, but we still have lots of gaps to fill. Fortunately we have more and more patients volunteering to help fill them, and a growing number of training programmes and courses to support them.
Patients everywhere have more access to information because of the internet. They can search for information and find answers from their phones and even pull up a research paper on their phone without having to go to a library and order it and wait three weeks for it to arrive. Back in 2005 a librarian told me I couldn’t photocopy a research paper because of copyright. It was my paper!
Now we use cartoons and colours for information for children, and I wish someone would do that for me too. Videos and You Tube could be utilised more. STAMPEDE is a large prostate cancer trial that has videos from participants talking to potential patients about what it is like. For written patient information, we now have a patient co-designed template available on the Medical Research Council Clinical Trial Unit (MRC CTU) website.
Patient rights are enshrined in the NHS Charter. We have the right to know about research opportunities and the right to choose our hospital, including the right to find one offering a trial. Patients have learned to act in groups. The NCRI Consumer Forum meets three times a year to share good practice in patient involvement, and each of the 100 members has links with other patient groups. Funders take patient involvement seriously and so they should. It’s our money and we give it to them to do research that will benefit people like us.
Every year more patients are taking part in clinical trials. Evidence shows that cancer patients who take part in clinical research are more likely to report higher levels of satisfaction with their overall care, and are more likely to have better outcomes in research-rich hospitals, even if they don’t take part in trials themselves. And we also know that most of our cancer studies recruit and retain well, and they’ve had have patients involved in designing them.
Research participation is good for patients, patient involvement is good for research, and good research produces better treatments and care for all of us. And if you’re lucky; cake!
What is public involvement in research?
Public involvement in research means research that is done ‘with’ or ‘by’ the public, not 'to', 'about' or 'for' them. It means that patients or other people with relevant experience contribute to how research is designed, conducted and disseminated.
Find out more about the HRA’s best practice principles for public involvement.