A brief interlude in all things politics gives me the opportunity to relay some events of the last few weeks.
Monday night saw me attend the launch of two new reports about attitudes to patient data and medical record. The first is by the Royal Academy of Engineering and draws upon debates among young people prompted by their viewing of Y-Touring’s excellent play ‘Breathing Country.’ The second is a report by the New Economics Foundation entitled ‘Who Sees What: Exploring public views on personal electronic health records’ although I can’t find it on their website yet. Both pointed to concerns over privacy. I think I need to read the latter one again in particular which seems innovative but quite challenging in its methodology. By the way. AMRC and others have continued to write to the Department of Health about the importance of the Research Capability Programme to research and you may know that some months ago the Secretary of State for Health gave the go-ahead for their pilot work.
By the way, I intend to write a longer piece about Y-Touring in due course. They celebrated their 21st birthday last week and we are excited about the ongoing partnership we have with them.
I was a panel member for an afternoon debate which was part of the first ever HealthCare Communications Association annual conference on Monday. It was Chatham House rules which seemed a bit daft and I thought I might have gone a bit OTT during the discussion. But I was a little amazed that in an audience of 180 – the PR leadership of the healthcare industry – less than 10 per cent had read Ben Goldacre’s book ‘Bad Science.’ Quite apart from it being a cogent critique of industry practices (as well as many other things) it is also in the top ten bestsellers list. Managing corporate reputation is surely knowing what others are saying about you – friend or foe.
AMRC held an excellent meeting with the Medicines for Children Research Network about three weeks ago now. The aim was to bring charities together with clinicians and research managers in the network to begin to forge closer working relationships. The mere fact of people being able to put faces to names should not be underestimated as part of the path to partnership. As they always say, the best sort of communication is always face-to-face. A report of the meeting will be forthcoming.
Two good reports have come out about Public and Patient Involvement (PPI) in research. They include a report of the ‘Building on Success’ think-tank event which we hosted with the James Lind Alliance, UKCRC and Involve and available here. In the new era of Quality Outcome the JLA approach to bringing clinicians and patients together to identify treatment uncertainties and areas for further research is rightly gaining currency and I have noticed an increasing number of our members heading their way. I can also recommend Arthritis Research UK’s candid and readable appraisal of the work of their USER committee which brings patients and clinicians together to examine research proposals.
Paywall warning aside – Dr Kieran Breen, Director of Research UK and an AMRC trustee has written an excellent guest blog for the Times today about what it will take to cure Parkinson’s. As he says, it won’t be a linear path and it will take many different actors to help solve the problems of finding the causes and treatments.
That’s the non-commercial break over. I’ve just had an email to say that the Science Minister, David Willetts, has announced a consultation on the new EU Framework Programme for research otherwise known as FP8. I can’t get the link to work on BIS yet so I’ll post it later today.