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Perhaps the tail is wagging the dog - a tussle about ethics

Posted Feb 19 2009 5:29pm

As health professionals we are privileged to hold a lot of information about people that we work with. Along with the personal information people give us through interviews, we have information we obtain from questionnaires, the observations we make, and from our reading of historical information the person (and other health providers) has provided. We also have our professional training and ongoing learning. This training means we are able to interpret the raw information that people trust us with, and make meaning of it through the models we have learned.

We then use this insight, sharing it with the person, and develop therapy that helps them achieve the goals in their life.

As a result of our training and experience, too, we learn that what looks simple, superficially, often is not. And what initially looks complex - may not be.

Usually, we are able to communicate the complexity of the symptoms and problems we see in our reports - and we usually find some way in words to describe the various features of the person’s presentation that we see. Most of our reports are written to help other health professionals understand what we have been doing (often from within our own profession, but just as often within other professions).

What we write in our reports is intended to be interpreted within a framework of similar knowledge - or we write reports according to our understanding of what we think another professional reader will understand.  There isn’t much point in writing a report that makes no sense to the reader!

In practice this means we refrain from using jargon (or at least interpret into ‘lay language’) and we avoid using expressions or comments that will be hard to interpret by someone who doesn’t have the background that we have.  So, typically, we don’t include the specific scores people achieve on questionnaires because they need to be interpreted to make any sense.  Scores on tests are ’shorthand’ for a whole lot of information - but shorthand that only other people who understand the questionnaire can interpret.

Sound good? And yes, it’s about ethics - to ensure the privileged position we hold because of what we know about the person is safeguarded, that the information we have is understood in context of the models and science we have about pain and pain management.

Pain and pain management, especially chronic pain, is complicated. If it were simple - we’d have found a nice simple answer (and many researchers and therapists would be either rich - or out of work!).

In fact, as time has gone on, the complicated psychosocial factors identified have been confirmed, and the equally complex underlying biological factors have been further clarified. The experience of chronic pain is not 1 + 1 + 1 = 3 it’s more like e^{ix} = \cos x + i\sin x \! . (Yes, I had to look that one up. In fact, it’s more complex than that equation!!)

Why am I writing about this?
Well, one health funder is asking for specific scores from a number of self-report questionnaires to be reported to case managers before, after and at follow-up for participants on a pain management programme.

Several problems arise from this seemingly simple request:

  • Who is going to read the scores?
  • Do they know what the scores mean?
  • If a score goes up, what does that mean?
  • If the score goes down, what does that mean?
  • What might influence those scores (apart from changes on the pain management programme)?
  • If one person achieves a certain score, and is working in paid work, while another achieves the same score but isn’t able to work, what does that mean?
  • Have the questionnaires been validated for measuring outcomes?
  • Do those questionnaires even measure something relevant to this person?
  • …and many more


It’s simply not ethical to give information to another person if they can’t make sense of that information.

And we should not give that information out without appropriate explanation. It may well be used inappropriately, inadvisedly, and not in the person’s best interests.

Although I’ve been working in the field of pain management for a while now, if I strike a new questionnaire, I need to read about it before I start to understand the numbers I see. And when I do read about it, I have a whole lot of other both conceptual/professional knowledge (about assessment, statistics, factors influencing self report) and about pain concepts and models that help me interpret and understand the limitations and usefulness of various measures.  So I understand the context in which an assessment measure is taken - and a bit about how much I can rely on the findings, or the import of those findings.

While case managers are professionals - they are not health professionals.  They don’t have either the training or the experience to interpret psychometric questionnaires used in pain management (or anywhere else).

It’s not OK to try to simplify the outcomes or reports from a pain management programme to a set of numbers.  People are way too complex, and so is pain and disability.  As a pain management professional I feel privileged to be trusted with so much knowledge about another person.  It’s my duty to be responsible with that information.  I’m not saying I won’t share information - but I choose to do that appropriately.  And that doesn’t mean giving out scores from psychometric questionnaires.

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