Choosing the best research to fund
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
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.
Meet some of the members
"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
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
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
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.’
What the experts 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