Would you trust a medical researcher with your data?

The report on the consultation on “Additional Users of Patient Records” reveals some clear and unsurprising differences of opinion between the “general public”, “patients” and “medical researchers”. It also reveals the weakness of consultation processes that are based on anything other than structured sampling to ensure the responses are representative of the views of the target audience.     

The consultation team did their best.

I too did my best (inlcuidng a call for responses in this blog) to whip up awareness of the consultation.

The jump in response after that blog entry indicates that as many as a quarter of the responses may have come from readers of this blog.

It may be that these account for many, perhaps even most, of those who do not trust medical researchers with data for which consent has not been collected.

But are they/you any more representative than the friends of medical research who are happy without consent, provided a committee of the great and the good has appoved. 

Twenty five years ago I had the opportunity, as an advisor to West London Training and Enterprise Council, to help organise a survey of the computer use of local employers and how they set about addressing their ICT skills and training needs. Unusually we were able to assemble the budget necessary to use state-of-the-art “computer assisted telephone interviewing use” using a structured sample of all local employers. The result was a response rate over over 50% – compared to normal rates of 2% or less from unstructured samples.

The patterns revealed were so different to those from other surveys that most had to be supressed: leaving only the headline “The users have taken over the system”. But not only did the survey show how few of thsoe whose businesses were coming to rely on computers had any professional ICT staff supporting them but that most were using systems that most professionals regarded as obsolete and the training facilities available to them were largely irrelevant to their needs, content and well as structure and location.

I suspect the same is true today. And not only with regard to ICT skills.

Far too much “accepted wisdom” is similarly based on returns from those with the time or interest to respond to surveys which do not have the terms of reference or budget to even try to get balanced inputs from the target audience. They are, in consequence not only unreliable but positively misleading.

That can be very dangerous if those at the top of the organisation are going to have to take “difficult” decisions and live with the political consequences because they can no longer buy their way out of trouble

That  raises the question of how to do better.

At this point I do commend the work of the Audit Commission on consultation processes. They may not yet have got the answers but they are at least asking the right questions. 

The Information Society Alliance (EURIM) is working with them on planning an event on information quality to look not only at the problems but at case studies of success and possible ways forward.  

Now take another look at the report on the consultation on “Additional Uses of Patient records” and think not of what the consultants did, given their terms of reference – but how their terms of reference came to be as they were. 

That is the point of leverage.

Is there the political will to mount it?

If not, how do we ensure that there is – or are we willing to accept the consequences.

          

 

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'Far too much "accepted wisdom" is similarly based on returns from those with the time or interest to respond to surveys' - absolutely! Too often the agenda is set by those with vested interests - a quick skim of the initial pages of the consultation report indicates to me that far more emphasis is going to be placed on responses from the organisations and the selected workshop attendees rather than the responses from the general public.

"think not of what the consultants did, given their terms of reference - but how their terms of reference came to be as they were" - quite, by framing the questions the way they did it leads to the responses they want. The minds at the top were already made up, so the consultation becomes an exercise to collect the information required to endorse the view rather than a genuine attempt at a dialogue with the service users (i.e. the public/patients)

Comment from Philip VIrgo - I did my original blog after attending one of the workshops. Those attending were indeed untypical - in that most were better informed than me (and I like to think I am well informed on this topic having worked for a pharmaceutical company for five years and being married into a medical clan). The quality of dicussion was exceptionally high - and also well balanced. They too, like the consultants, wanted a wider input.

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