The Academy of Medical Sciences (AMS) today published its report of the meeting it held a few months ago, looking at progress with improving the regulatory of environment for medical research. I blogged about being a panellist at the meeting as you may recall. The report’s conclusions are noteworthy for the second bullet point about public and patient involvement which is eyebrow-raisingly strong for the Academy.
The Academy report has a lot to say about patient data issues so just to remind you that the leaflet produced by the UK Clinical Research Collaboration (UKCRC) partners, ‘Your medical records saves lives’ is available if you go here (see last on the publications list on the right-hand side-bar).
It is International Clinical Trials Day on Sunday (20th May) and there’s a short statement from the Chief Medical Officer and Director of R&D at NIHR, Dame Sally Davies, on the National Institute for Health Research (NIHR) website. There’s more information about what clinical trials day is on the NIHR CRN CC website here. I am looking forward to doing a round of radio interviews on Monday morning with a number of patients also taking part. The vision for 2013 is to make the day much more patient driven in every way, but this is a good start I feel.
Also next week – on the 24th May – I shall be taking part in a live Q&A about public and patient involvement on The Guardian’s healthcare network. Details will be forthcoming shortly but at the moment the link in the previous sentence will take you to a short video of me talking a bit about my history in the world of health care. For some reason I look terribly unwell, perhaps it is the beard which I have now got rid of. But I think the words make sense.
I understand Rare Disease UK is close to putting the final touches to its response to the Government’s consultation on a strategy for rare diseases. So, if you haven’t done so yet, let them know what you think.