Time for Change

In early November I attended the NCRI Conference in Liverpool. I was offered a bursary by NCRI to cover my expenses and as I was speaking in a session on Quality of Life my delegate fee was waived.

It was an event which I enjoyed, as I have every other NCRI Conference since it started in 2005, although I missed a couple because I was having treatment at the time. It is a valuable way of maintaining contact with people across the spectrum of cancer research, scientists, clinicians and patients. Of course that social element is not the main reason for having the event, which includes a large amount of exhibition space. What is noticeable is that large pharma companies do not exhibit and that clinicians are few in number, those attending being ones with a significant research responsibility. Laboratory science dominates and NCRI has little to do with laboratory science. The main conference sessions are a bit formulaic – three ‘levels’ of plenary, symposium and parallel session, the latter with three or four speakers and the content mostly fixed months beforehand – leaving little opportunity to reflect ‘breaking’ news.

The ambition for joining everyone up, which Professor Sir Alex Markham expressed in 2005 (he was then NCRI Chair), has withered and it is a very one-sided event with token recognition of what NCRI actually does. The structures also fail to recognise that NCRI is not the NCRI of fifteen years ago. It is now an independent charity with its charity funder/members working together to develop cancer research at a policy and strategic level, not to fund it, educate its staff or evaluate the science.

One of the stresses is that the NCRI Conference is underwritten by Cancer Research UK, and all credit to them for carrying the venture forward. It is intriguing that as Cancer Research UK has started to bring its weight to bear on policy and strategic issues, very effectively, it has failed to ensure that these issues are represented properly in the NCRI Conference. They are trapped by the rigidity of programming structures which cannot respond to current events. CRUK, also to its credit, is a significant funder of NCRI.

It is becoming clear that things have changed and the Conference is overdue for a re-launch in new colours. It does not reflect NCRI’s activities or the needs of NCRI itself that could be met through having a proper national event to consider policy and its implementation, new initiatives (such as the current Survivorship partnership) and the steps being taken by member charities which could be better if joined up. Change is never easy, or comfortable, but it is needed. Clearly there will be funding issues and a re-launch would need to be carefully positioned.

A critical part of that positioning is the relationship with pharma. While the industry self-regulatory system fails to recognise that patients have a valued role to play in the design and development of research, pharma cannot fully participate in the way that it should. One of NCRI’s core principles is the involvement of ‘consumers’ – patients and carers. It is easy for NCRI to ensure that patients attending its conference are ‘accredited’ research representatives, whether they work with NCRI or with charities such as Cancer Research UK. The failure to recognise this by the pharmaceutical industry is an indictment of its shambolic, legalistic and patronising approach to patient involvement. Until that changes pharma attempts at patient involvement in research can only be tokenistic and trivial.

So there is much that needs change and as patients we can point it out and pressurise for it.

Roger Wilson is a member of the NCRI Consumer Forum and its longest serving consumer/patient. He was an NCRI Board Member 2004-2007 and closely involved with the first three NCRI Conferences. He is also a Member of Cancer Research UK.