It is one of the boldest and most exciting initiatives in UK health research and care that I have witnessed. It's also happening at lightning speed. In the eighteen months since the Prime Minister announced the 100,000 Genomes Project to coincide with the NHS's 65th birthday in 2013, we have gone from almost a standing start … Continue reading Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers
Genetic Alliance UK
A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
So here's my unsubstantiated personal theory. It is that one of the root causes of the problems besetting today's NHS' is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years. From almost the day … Continue reading A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly
Details about ‘Rare Disease Day’ of Action – 28th Feb 2013
The following was sent to Rare Disease UK members and I thought I should pass it on as it explains what is happening and how you can get involved this year. All except the first link won't work as I am mobile but the first URL address will take you to where all this stuff is … Continue reading Details about ‘Rare Disease Day’ of Action – 28th Feb 2013
The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
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 … Continue reading The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
Making the EU work better for research charities
On the face of it you might think this a very Friday afternoon sort of article. But, as a discussion of how European foundations operate in a research funding context, it is is extremely interesting. The news peg for it is that plans are afoot by the European Commission to present a regulation for a European Foundation … Continue reading Making the EU work better for research charities
