As a patient involved with cancer research for more than 15 years the semantics of patient involvement are somewhat frustrating.
It all centres around, what are we called?
The UK’s National Cancer Research Institute (NCRI) which paved the way in cancer calls the patients and carers who work on its various study groups “consumers”. That term was decided nearly 20 years ago as a non-specific way of including patients, carers, bereaved and long-term survivors – anyone with an interest in cancer as a lay person. Some “consumers” over the years have had a science background, most have not. So being a lay person with an interest and a preparedness to learn has been the prime qualification. There is now a proper recruitment and training process. The differing abilities of each individual are recognised. Several “consumers” have advised the NHS and major charities at a strategic level, have worked on funding panels handling programmes costing millions, many speak about research at leading conferences, and the Consumer Forum provides a structure for experiences to be shared. The Forum now numbers 90 people, more than half active on NCRI study groups, the remainder having served their time and working in other areas.
The question of whether there is a better word to use than “consumer” has been argued over many times.
The term “Research Partner” is getting wide use. Some of the Clinical Trial Units are using it, the Wales Cancer Research Centre (WCRC) uses it, and it is widely used in the supportive and palliative care community. But adopting “Research Partner” gives problems to some organisations. Partner is a very specific word, with implications, and some people find its use confusing in this context. There are also times when it is valuable to recognise actual patients from those who have a cancer experience in other ways.
The National Institute for Health Research has its Patient Research Ambassadors, but these should be seen as a different side of the involvement and engagement issue. These people support the front-line hospitals and research clinicians, encouraging accrual into studies rather than helping define major clinical studies themselves.
So what term could we use which might gain general approval and adoption?
Should we seek a single term, might it be better to have several terms which help define the actual work undertaken by involved patients?
After all, at the moment the deep involvement which NCRI consumers have in the NCRI Clinical Studies Groups, or the WCRC Research Partners have in their Research Themes, is not replicated in many places. In these areas patients have helped determine the direction a study takes, looking at endpoints, inclusion criteria, use of placebo, stopping rules, crossover – the list is a long one. They have questioned a research programme’s proposed priorities, advised changes which help accrual or serve to reduce patient burden in a study. However, their most important effect has been to change the nature of the conversation, the process has evolved under their influence over time and is now conducted differently from what it was fifteen years ago. Should these involved patients have a term to describe them which differentiates their commitment and growing knowledge from others, who may simply be brought in ad hoc to be consulted at some point in developing a study and to allow the researchers to tick the box on the funder’s application form.
The term “Patient Advocate” is widely used in Europe. This also has problems. Not all patients working in research are advocates and not all advocates are patients, yet the term is used in an all-encompassing way and takes no account of the depth of experience each individual may bring.
The trouble is I don’t have an answer.
At the moment I have so say I wish long life to the term “consumer”. Because only the NCRI and some of its affiliates use the term it is acquiring an aura which reflects the experience and the standing of the members of the Consumer Forum. The word is acquiring a new meaning in cancer research.
This is Part 1 of my thoughts. Part 2 will follow next week.