In praise of the “consumer” – Part 2

What should patient representatives and advocates be called? Perhaps it should be something closer to what they actually do, rather than a bland generic term, such as ‘consumer’ or ‘research partner’. However, are there terms which can cover it?

Perhaps it is useful to describe a hierarchy of involvement. The most effective people at any of these ‘levels’ may not be the obvious ones, it all depends on an individual’s character, life experience and desire to help with the task. The hierarchy is something along the following lines, nothing is exclusive of anything else:

  • ad hoc single-meeting consultation, work on Patient Consent Information
  • regular association with a research group, university research unit, or clinical trials group contributing to a range of studies
  • serving on trial management group or IDMC, participation in study analysis, management of involvement
  • review of funding applications, performance review, panel review of research programmes, organisational board contributions
  • strategic involvement in policy, development of inter/national guidance, board level interaction

There are no value judgements in this hierarchy.  An involved patient may be quite happy working at the first level and could be contributing in a truly valuable way. Similarly, others could be working at several ‘levels’ at once. However, if a requirement appears which can be definably anywhere in this hierarchy it should not automatically be assumed that any patient could handle it.  A properly judged decision on the kind of experience needed and on offer should be taken, and it might need care and tact.

We also need to think about the kinds of impact which can be made by involved patients. The truth is that the infrequency of patients involved at the two lower levels in the bulleted list reflects the potential for greater impact, and the fear that can be associated with unpredictable challenges and demands. Reality shows us that this fear is unnecessary in a well managed and regulated organisation. Twenty years ago that fear was manifested at the top levels of the list as well, but has now dissipated with time and experience. This gives us a clue about the real impact of patient involvement. It is not about an ‘intervention’ which makes a difference (big or small) in one study, or one programme, it is about process evolution. Patients affect the tone and fashion of a meeting, their input in working groups shapes things in slightly different ways, their eye for different detail picks up things which can be modified beneficially. It is subtle, some might say insidious, but it works.

The patient representatives and advocates who recognise this and work at it are possibly the most effective over time. They are change agents, though of a kind not usually described in management theories.

So, back to the question, what do we call them?  I am stumped for a term or terms.

I will settle for ‘consumer’, ‘research partner’ and ‘patient advocate’. They say little and contextually mean not very much. That is perhaps a strength.



Find a fitting tribute …

Tessa Jowell blazed like a comet in cancer advocacy for a few months, and now she has gone. The coverage of her death has been perhaps too much of a mawkish celebration by the political and media glitterati. Monday morning’s Today programme on Radio 4 managed to be toe-curling, with the Secretary of State for Health incongruously struggling to explain adaptive clinical trials and a cringe-making interview with Tessa’s husband and daughter about her last days.

Tessa Jowell was a valued and respected cancer patient advocate, for all too brief a time. She used her position in society in an appropriate and powerful manner to get important messages across. She blazed a fire across the world of research and treatment of brain cancer in a way no-one before has done, with clear and coherent messages and purpose. It is wonderful when one advocate manages to create change; it is rarely as public, and this is my point.

There are hundreds of other cancer patient advocates, working locally, nationally and internationally. Their fire is as hot as Tessa’s but the political and media elite find the subject of cancer too difficult to handle unless it directly affects their charmed circle. These less well-known advocates also reach the end of life, unnoticed except by those close to them, and with no multi-million pound tributes following them. Those of us who knew them respect and remember, and then we get back to facing the challenge of creating change.

These last few days have shown us the nation’s charmed elite in public grief. A £20million boost to research into brain tumours is their tribute (after years of ignoring the issues). How difficult would it be for the government to put a fraction of that into supporting other Tessas, supporting patient involvement in research? If that was accompanied by noticing the achievements of the many patient advocates working day in and day out to make change happen, it might be an appropriate and lasting tribute to Tessa Jowell and the role she fulfilled in the last months of her life.

It might also provide someone who could help the Today programme understand adaptive trials.

In praise of the “consumer”

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.