A new panel of people affected by prostate cancer are helping us make sure we’re funding research that matters.
Over the next three years we’ll be investing £25 million in research – trying to identify men at highest risk of getting aggressive prostate cancer, develop better tests to tell aggressive from non-aggressive cancer, and find new targeted treatments for advanced prostate cancer.
A vital part of this is making sure that we’re funding research that will really make a difference to the lives of men with prostate cancer.
And that’s why we’ve set up our new Grants Advisory Panel (GAP) of 14 people affected by prostate cancer.
We’ve always asked men with prostate cancer to give us a patients’ perspective on proposed research, as part of our Research Advisory Committee (RAC). But now we want to give them a louder voice in funding our research.
The new Grants Advisory Panel (GAP) reviews and discusses the research applications that are submitted to us and then represents the views of people with prostate cancer to our Research Advisory Committee (RAC), contributing to the funding recommendations. It helps us make sure that we’re not only funding the best science by the best people in the best places, but also the science that’s most valued by those affected by prostate cancer.
You might ask what Derek, Barry, Trevor, Stephen, Chris, Roger, Neville, Stuart, Keith, Iain, Kuljeet, Kenneth, Robert and Robin know about what makes a good research application. And the answer may be ‘not much’. But what they do know is what it’s like to be affected by prostate cancer.
The scientists on the RAC have always impressed me with their concern for men affected by prostate cancer, and their determination to seek and find effective ways to prevent, diagnose, and treat the disease
Robert, 69, has been a lay member of the Research Advisory Committee (RAC) since 2004, and has also been involved with Prostate Cancer UK in various other roles, including qualifying as a Peer Support Volunteer earlier this year.
‘I wanted to use my personal experience of prostate cancer treatment, and my professional background as an academic librarian, to give something back’, he explains.
He goes on to say, ‘I appreciate the opportunity to discuss the merits, as I see them, of different research proposals on an equivalent footing with the experts, and enjoy making funding recommendations that will make a real difference to the lives of men with prostate cancer. However, assessing each proposal and narrowing the field to decide which, out of a lot of exciting ideas, are the really important ones, is definitely a major challenge!’
As to why a prostate cancer patient perspective on research is important, Robert says, ‘Men affected by prostate cancer have personal experience of the disease, and a perspective on the research that for all their skill and expertise, the scientists and clinicians on the panel may not.’
For me, the ‘holy grail’ of prostate cancer research would be a cure for advanced prostate cancer, but that’s probably a long way off. So instead, I’ll say a better diagnostic test – one that will do the job it’s supposed to do.
Kenneth has been working with the Campaigns and Information teams at Prostate Cancer UK for six and half years now. He joined the GAP this year, because he was interested in learning more about what Prostate Cancer UK was doing to fight prostate cancer through research.
He says, ‘reading the applications was challenging and time consuming, but it was very interesting and I really enjoyed seeing how scientists are trying to tackle the important questions in prostate cancer research. Some applications were really well written and easy to understand, but others were very difficult. I had to read them six or seven times with a tea-break in the middle to try to figure out what was going on! Mind you, I felt better about that after speaking to one of the scientists, who told me that if the GAP thought an application was badly written and hard to understand, they probably did too!’.
Kenneth then said, ‘I was surprised by how often the scientists agreed with the lay panel about which proposals covered important priorities in prostate cancer research. I think the only exceptions were when the science didn’t add up!’
Men shouldn’t have to accept terrible side effects from prostate cancer treatment. They adapt, because they have no choice, but they shouldn’t have to
Neville, 76, got involved with Prostate Cancer UK’s Grant Advisory Panel because he wanted to do anything he could to make a difference for men.
He says, ‘I discovered Prostate Cancer UK and the information they provide too late. I’d already been passed along a string of doctors and had treatment I wouldn’t have chosen if I knew that there were other options. I want to do my best to help other men avoid the mistakes I made. I really enjoyed the process of reading through and assessing all the applications. I learnt a great deal about prostate cancer, from both a biological and medical perspective, and it’s fascinating to find out what’s actually happening to me. I think it’s very important to have a patients’ perspective in research funding decisions, because at the end of the day, research is to help patients, and the GAP members can all give a personal perspective of how beneficial the proposed research would be.’
The biggest challenge is representing the views of all men with prostate cancer.
Robin answered an advert for volunteers with prostate cancer to be lay members of the RAC in 2008, and was invited to join the committee soon after that. His experience of being diagnosed with prostate cancer, and having to choose what he felt was the best treatment for him, as well as a keen interest in medical science made joining the RAC a good way for Robin to contribute to Prostate Cancer UK’s work.
‘I consider being part of the Research Advisory Committee, and also now the GAP, a great privilege. I’ve learnt a lot over the last few years, and find the whole area fascinating. It’s hard work being on the RAC and GAP, but really interesting to learn about cutting edge advances.’
In terms of the challenges involved in representing the lay view on the RAC, and the benefits that setting up the GAP has brought, Robin says, ‘The biggest challenge is representing the views of all men with prostate cancer. The GAP has made this a lot easier, because it’s given us a broader platform of prostate cancer experience to speak from. And it’s apparent that the experts assessing the grants value what the GAP has to say.’
So what do the scientists think about having men with prostate cancer involved in funding decisions?
We asked Professor Craig Robson, a member of the RAC and Prostate Cancer UK grant holder.
He said, ‘The contributions from the lay members on the RAC are extremely valuable to help the scientists and clinicians on the committee focus our attention on the major issue – directing Prostate Cancer UK funding towards the research questions that are directly relevant to men with prostate cancer. As an applicant for Prostate Cancer UK grants, I have to admit that I haven’t always presented my work clearly to non-scientists. Feedback from the lay members is a really helpful reminder to avoid too much technical jargon, which is often a feature of grant applications to the charity.’