Yes, that is a long headline is it not?
PharmaTimes and others cover a paper in PloS Medicine authored by a number of medicines regulators including the European Medicines Agency (EMA), calling for openness in raw trial data. The three pronged approach they suggest looks like a good basis for discussion. It would be interesting to know whether patient groups or charities have made any response to their suggestions.
Meanwhile, the European Patients’ Academy on Therapuetic Innovation (EUPATI) has issued a call for examples of educational materials on medicines development. EUPATI is a new initiative launched earlier this year to improve patient-facing materials on medicines R&D.
Thought people might be interested to know that the European Patients’ Academy on Therapeutic Innovation (otherwise known as EUPATI) is holding its launch meeting on 27th March 2012 in Copenhagen. Details and programme here. I wrote about the EUPATI initiative on my blog in February if you want to find out more.
Also, it would be remiss of me not to draw attention to the fact that Patientfocus have responded to ‘that blog’ about ‘that article’ in The Guardian looking at gathering patient experience and insight. And a good response it is too. Thanks Helen. See her comments on the blog here.
The EU economy might be splintering apart. But, meanwhile, a number of patient/public/private organisations are ‘euro-zoning’ in on the task of providing better information for patients on medicines development.
The new initiative – which was launched on 1st February – is called the European Patients Academy on Therapeutic Innovation or EUPATI for short.
Thank goodness they did indeed shorten it to a more palatable – indeed culinary sounding – anagram. Is it me or is EU-speak and what EU organisations put out completely indicepherable all of the time? And isn’t there an irony in that, given the objective?
I’ve not quite disentangled all the bits and bodies behind EUPATI, but the consortium is being led by the European Patients Forum. EUPATI has its first public conference coming up later this year and has a range of products in its sights including an internet library of resources.
I was sent the news release by a number of good colleagues, and I am taking heart from this that UK patients and patient groups are getting involved.