I spoke at the Clinical Discovery 2012 conference yesterday about the future value and impact of clinical research. This is one of a number of similar events I’ve presented at over the last month or so. On reflection there generally seems a more ‘upbeat’ conversation among conference-goers about clinical research in the UK compared to this time last year. In fact I’ve heard a number of people speak from the floor about how we are rising up the international league tables again in terms of delivering clinical trials. It will be interesting to see any emerging data to support these case reports.
One of the slides I put up yesterday showed this reported quote from Sir Andrew Witty’s speech (CEO, GlaxoSmithKline (GSK)) at the Wellcome Trust from last week.
“There isn’t a day goes by that me and the rest of the company aren’t grateful for what patients offer to do in a clinical trial. They offer willingly to go through a process of experimentation. That’s an extraordinary gift from individual men and women. At one very human level actually we should be finding ways to make that commitment as useful as it can possibly be for society.“
This is the speech in which Witty made his announcement that GSK would be opening up its clinical trial data and pulling together an independent board composed of, among others, patients, to consider requests from researchers who wish to access it. An undoubtedly welcome move. But, as the old saying goes, ‘one swallow doesn’t make a summer.’ Patients – or at least the ones I talk too – are increasingly concerned about this stuff and the rest of industry needs to be encouraged to follow suit. As more patients become involved in research they will rightly have searching questions that can only be properly answered with greater transparency.
Anyway, I suppose the point I was trying to make in my slide was that, in any discussion about the value and impact of clinical research, it is imperative that we define it from a patient perspective – in terms of patient outcomes, improvements in quality of care but also their experience of taking part in research. Not just the wealth of the nation. And – as Sir Andrew says in his quote – that also means, at a very human level, acknowledging the value of people’s contribution.
I went on to say that one of the perennial complaints of people who have taken part in research – and a symbolic one in terms of their status within the system – is not being thanked for taking part in research and, more importantly, receiving no feedback whatsoever about what the research found and what question it helped to answer. I guess someone will tell me – as others have on a number of occasions – that we can’t do this because of commercial confidentiality etc etc. But I suspect they will crumble in the same way that many of the arguments against greater openness and transparency in industry trial data are crumbling. Sooner rather than later I hope.