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Obama goes troubleshooting on clinical trials

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Thanks for visiting my blog. I am Chair of INVOLVE - the UK's national advisory group on public involvement - and NIHR National Director for Public Participation and Engagement in Research. I was CEO at the Association of Medical Research Charities (AMRC) from 2006 until 2011. My full profile can be found on the 'Biography' page. The views on here are all personal ones unless otherwise stated. I hope you enjoy some of the things I write and/or find a useful link or two along the way.

Is it me or does anyone else think that No 10 could have perhaps chosen more wisely its choice of title for the new army of individuals who David Cameron says will help ‘trouble’ families: ‘troubleshooters’ doesn’t sound quite right?

This only a week after No 10 made a complete hash of the 24 hours of ‘trailed’ news leading up the announcement of the life sciences package.  All of which resulted in misleading headlines about animals, pharma and the such like.

Perhaps we should enhance that old actor’s adage: ‘Never work with children, animals or…[suggestions welcome]?’  More seriously, given the Government is so mindful about costs and impact, perhaps the money for this sort of announcement might be better spent next time asking the Science Media Centre to arrange the briefing(s).

On the subject of troubleshooting on clinical trials and as a follow-up to my previous posts over the last week about ‘research citizens’ and a ‘Health Research Ombudsman’ you might be interested in yesterday’s report in the United States by The Presidential Commission for the Study of Bioethical Issues entitled ‘Moral Science: Protecting Participants in Human Subjects Research.’

The Washington Post has a good summary and link to the report if you are interested in learning more.   The report follows revelations earlier this year of shocking abuse of clinical trials participants in Guatamela some 40 years ago. The report’s conclusions relate to both domestic and to international trials with US sponsors.

The report basically says that clinical trials in the US are safer than they have ever been but that they don’t really have the data or information to prove that statement beyond doubt including basic info about the trials underway themselves.  It then makes a series of recommendations for improvement including better ‘community engagement.’

As I read the report I reflected on the fact that whatever my criticisms are and will continue to be, we do seem to be more enlightened in the UK about public involvement in clinical research, the care and welfare of patients on trials etc.  Or perhaps I am just in a good mood because it is Friday.

By the way I seem to overhear something on BBC Radio 4 last night saying that Simon Cox was going to be looking at clinical trials in ‘The Report’ next week, the topical news programme which airs on Thursdays at 8pm…

 


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