We are seeing a real shift in patient involvement in healthcare research. It is very encouraging to those of us that have been involved for a decade or more to see how the word is spreading. This is despite the relative disinterest in it shown by the current UK government. Its predecessor was an encourager and ensured that small pots of cash and other resources were made available at crucial moments. The disinterest is perhaps most noticeable in cancer research, for long a leader in the field of patient involvement – not the only leader it must be said but probably the most prominent.
The main organisation in clinical cancer research and the management of late stage trials was the National Cancer Research Network (NCRN). It is the organisation that raised patient accrual into cancer studies from 3.5% of incidence to well over 20% of incidence, a world leader. It is now no more – subsumed into the National Institute for Health Research Clinical Research Network structure.
(For acronym watchers this abbreviates to NIHR CRN. It has a Co-ordinating Centre for which you add CC. I believe it is the current leader in the NHS’s secret competition to adopt the longest acronym.)
There are now 30 speciality areas in healthcare research under the wing of the NIHR CRN. Looking at the list of specialities it is impossible to find one where advances in care informed by high quality research is not desirable. Most have a disease focus, a few such as Critical Care and Public Health have a broad remit across a wide range of diseases. None is as large as cancer in terms of the number of studies underway, or the amount of cash invested, or the range of research funders, or the number of industry funded studies which are accredited for NHS support. However all are shoe-horned into the one over-riding structure.
There are now 15 geographical networks. Cancer research used to have 30 local networks each with a patient ‘partnership’ group. Other diseases had differing numbers of networks, with lots of overlaps and some of them did not have national coverage. This government’s approach to simplifying things has forced everything into one structure, ditching lots of expertise and muddling priorities along the way. Each of these plump ‘no longer local’ networks has a patient involvement strand but because of costs the recruiting tends to be around the geographical centre where the network has its headquarters. There is, of course, no guarantee of any involved patient having the specific disease experience that a researcher might like to call upon.
At a national level patient involvement in cancer research has shifted from NCRN to NCRI. The ‘consumer’ group was always called an NCRI group, even though it was run by NCRN. It has also changed its name to the NCRI Consumer Forum. Membership is largely the same but retirements and the need for continuing recruitment to CSGs means that a high proportion of members have been recruited in the last year. The big problem is that funding from the government has been lost. All credit to NCRI members who have agreed a budget and to NIHR CRN CC, which has contributed. The NCRI has also become incorporated as a charitable organisation, with a board of Trustees which includes a patient and is chaired by the CEO of a patient charity. Its members are its funders, not directly represented by the Trustees.
This is a story of the steady wearing down of patient involvement resources hidden through structural changes and shifting budgets. Getting clinical research into one amorphous structure to the disbenefit of cancer research may appeal to NHS control freaks and the envious. Cancer research is disliked by many in other research areas because it is so large and consumes such large budgets. I have heard the argument that it has been a favoured child for too long. Creating a bland giant in which it has to fight for every bit of territory appeals to some. Allowing nationally funded patient involvement in cancer research to wither away probably pleases those people.
The importance of patient involvement in the development of new studies is now undeniable. Researchers are required by many funders to demonstrate how the user community has influenced their study and patients sit on the award panels of all kinds of research funders. In cancer the peer review process through the NCRI Clinical Studies Groups includes patients and carers, a ready resource immediately available to researchers following that route. However there is no certainty that funding for that immensely important resource will continue.
Independent Cancer Patient Voice (ICPV), a small charity supporting patient involvement in research, responds to a steady stream of researchers wanting different kinds of involvement in research, from looking at initial ideas, reviewing patient information leaflets and providing membership of trial steering groups. Presumably these researchers can no longer find that expertise in the patient groups in their big bland otherwise distracted local research networks – surprise surprise!
The growth in pharmaceutical company interest in having the views of patients is also noticeable. Novartis has undertaken a pan-European project EPALCO to make the company more patient-focussed, although because many of its studies are designed in the USA where patient involvement is almost non-existent, there are still some barriers to overcome. Astra Zeneca and Amgen are two other European pharmaceutical giants with relatively advanced ideas being actively explored. The lesson here is that the pharma companies usually fund this work.
So patient involvement in cancer research is increasing but the resources available are disappearing. ICPV bears a growing burden, at no cost to the research community and its members give their time free of charge. There is a strong core NCRI group which government has stopped funding after twelve years and seems ready to allow to wither away.
This must be a concern for the NCRI Trustees. What a depressing contrast with all the high sounding words from ministers about healthcare being centred on the patient, about sensitivity to patient needs and the importance of research delivering what is of value clinically.