Peter Rainey is a member of our Consumer Forum, which brings the experiences of people affected by cancer to all of NCRI’s work.

Peter recently told us about his perspective on the Consumer Forum, and the importance of involving people affected in research.

If you think about the breadth of cancer research – from basic science all the way through to palliative care – and then multiply that by the number of different cancers, the scope for research is huge; quite overwhelming in fact.

So a crucial challenge for NCRI and its member organisations is to identify the research that really matters and make sure it gets done.

How do we separate the “Nice to Know” from the “Need to Know”? And how do we shorten the timeline from asking the research question to seeing the answer implemented and delivering patient benefit?

Academic papers are all well and good, but what people affected by cancer want, what everyone wants, is research that delivers not just evidence, but actionable evidence: research that results in changes in policy and in clinical practice; research that leads to willing investment on the part of Commissioners and Departments of Health.

Addressing these challenges is why NCRI needs people affected by cancer to be involved in their work through the Consumer Forum. Their insights & experience help to inform the discussion and help to focus on what matters most for patients.

And it’s happening now. Members of NCRI’s Consumer Forum are engaged:

  • On Clinical studies groups: prioritising research topics; helping to design clinical trials; advising on patient recruitment; making research accessible to the public.
  • On Committees and steering groups, patients are helping to prioritise and shape initiatives
  • And at a strategic level patients are making a contribution to governance and direction.

And not just with NCRI itself, but with its partners and member organisations.

I myself have been involved with NCRI and its member organisations for ten years, on steering groups, advisory groups, patient panels and funding committees. I’ve been fortunate to be involved right across the spectrum, ranging from laboratory science through prevention, early diagnosis, trials for new treatments to primary and palliative care. It’s a learning curve I hadn’t expected to have, but one I’ve enjoyed immensely.

The challenge to make research relevant, to make it count and to make it accessible will always exist. I have a strong belief that involving patients and those affected by cancer will be an important part of meeting that challenge.

And I’m delighted that NCRI agrees.