Helping to choose which trials Cancer Research UK funds: a patient’s perspective

The UK leads the world in the number of cancer patients who sign up to take part in clinical trials of new treatments. These trials are crucial not just to find out whether the treatments work, but also to ensure that they are safe.

As Director of Clinical Trials at Cancer Research UK, I am lucky enough to oversee the team responsible for many of these trials. Cancer Research UK is a major funder of more than 250 trials that are either up and running or in development.

We choose which trials to fund through more than 20 independent experts who sit on the Clinical Trials Advisory and Awards Committee (CTAAC). Along with our other funding committees, CTAAC has the huge responsibility of sifting through piles of applications and deciding on the best way to allocate funds generously donated by the public.

Making these decisions is never easy, and we’ve recently enlisted the help of patient representatives to give their unique perspective on these clinical trial applications. They help ensure the trials are practical and that patients’ needs are always firmly at the centre of our decisions.

Shirley Harrison is one such patient. Here she tells her story about why she got involved, and her experience of working on CTAAC:

Shirley on holiday last year

When I discovered I had breast cancer 14 years ago I was devastated.

The greatest worry was that I wouldn’t be around to see my son, then aged nine, grow up. Having lost my own mother to breast cancer when I was 11, I knew how it felt to see your parent waste away in front of you, and to grow up without a mother’s love and support.

But after surgery and five years of hormone treatment I began to believe that the cancer had been banished.

Meanwhile I had escalated my interest in cancer research from simply donating cash to getting involved in decisions about what research would be beneficial to those affected by cancer and how best to recruit patients to research studies.

Joining the committee

Initially this was in my local area, but as I became better informed one thing led to another, and, as a patient with a smart suit and high level committee experience, I found there were many opportunities to contribute locally and nationally.

Patient and public involvement (PPI) in many areas of health policy and research was becoming fashionable.

Cancer Research UK wasn’t in the vanguard in recruiting patients to their scientific committees. But it had made a small step in the right direction by appointing a carer to its Clinical Trials Awards Advisory Committee in 2007.

Good practice in PPI is to have two lay people, and in 2010 Cancer Research UK advertised for a second member. After a competitive process I was appointed and attended my first meeting in July 2010.

At that meeting I was surprised to find all the professional members of the committee – surgeons, oncologists, radiologists and statisticians – were seated at a big table, while the two lay members were at a separate table, behind a pillar. There was no introduction to the other committee members, nor any invitation for the lay members to speak up.

Words were had!

An equal vote

Shirley at work

I’m glad to say that things have changed dramatically.

We’re now treated as full, voting members of the committee, and our views are actively sought. The committee meets three times a year, for two days at a time, and decides the fate of 30-40 proposals, most of which are asking for funding of many thousands of pounds to test out new treatments.

Others have found funding elsewhere and simply want the charity’s endorsement – clearly it’s very important to have this as it gives the study further credibility.

Each lay member receives half the proposals to study in detail and comment on; the other half we also see and are free to make suggestions on those too. Reading the proposals takes up a lot of time, and I do have to work hard to understand some of the science and the statistics.

Having a Cancer Research UK nurse as a mentor helps. And other members of the committee, now that we know each other better, are always happy to help.

Giving something back

Like so many cancer patients, I have always wanted to be able to give something back as a small thank you for the amazing treatments I have received. Yes, I’ve run the Race for Life a few times, but for me – vital though raising money is – that’s not enough.

I’m able to bring the expertise gained in my professional life as well as my knowledge of cancer (I’ve done the courses), and my experience of being a patient – including a patient on a clinical trial – to make sure the charity uses its money to fund the best possible research that will be attractive and of value to patients in the future.

As an example of my input, one trial proposed recruiting patients with a condition that meant that their average survival was only four months, and included monthly bone marrow extractions. I asked the question: do these patients know their realistic prognosis before deciding whether to consent to unpleasant and invasive treatment in the last few weeks of life? This led to a lengthy discussion about the ethical implications.

CTAAC also keeps me right up to date with developments, which helps me make the most of the regular appointments I have with health professionals.

Because my cancer hadn’t been exiled, it was merely sleeping.

Personal rollercoaster ride

In 2011 I discovered that breast cancer cells had escaped and taken up residence in my peritoneum (the membrane which lines the abdominal cavity). While many primary cancers can be cured, secondary cancers can’t; they can only be treated.

I knew there would be a range of treatments, including different kinds of chemotherapy, together with endocrine or hormone therapy. But, frankly, I just wanted the one that worked for me.

So began my own personal rollercoaster ride. Eight months on a hormone therapy before it ceased to work, then a clinical trial using an experimental drug as well as a different hormone treatment, before I had to abandon that and start chemotherapy just after Christmas 2012.

The chemo was grim but seemed to have done the trick. I lost my hair but gained two glamorous wigs, and moved on to another endocrine treatment, which worked only for a few months before scans showed the cancer had progressed to my lungs and liver.

So it’s pretty obvious that hormone treatments are not going to help me anymore, and I am now on an oral chemo regimen. I have the utmost confidence in the medical team that looks after me – the distinguished oncologist, the very helpful specialist nurse (not every hospital has one for secondary breast cancer patients, but they should) and my lovely GP who pops in for a chat whenever I need her.

Having secondary breast cancer has made me realise that life really is too short to waste in unnecessary activities – such as holding grudges, feeling sorry for myself and worrying about the future. People say I have a very positive attitude, but I don’t want to squander my precious time being miserable.

And it wouldn’t be much fun for my family and friends if I moped about all the time. I know the disease will progress, but meanwhile I’m doing my best to live life to the full.

Mutual benefits

Cancer Research UK has moved on from its first tentative attempts at PPI. Lay members have recently been appointed to some of their other funding committees, and there is a clear understanding that the charity can benefit from PPI in many ways.

As for me and my ‘precious time’, I feel privileged to be able to spend some of it on working with the charity, and I was happy to accept an extension to my original appointment to CTAAC.

Cures for the many diseases that constitute breast cancer won’t be discovered in my lifetime, but they’re coming, they’re coming…

Shirley