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.