A view about the health secretary’s announcement on healthy volunteers and DNA tests

Quite a few of Saturday's papers covered the health secretary's announcement that he wants the NHS to offer healthy 'volunteers' the option of paying to have their DNA analysed. The goal is to recruit 5 million volunteers resulting in masses of data which can be used by researchers to further understanding and develop new treatments.... Continue Reading →

New @HRA_Latest @OfficialNIHR data on UK public attitudes to health research highlights need to work with under-represented groups to break down barriers #diversity

White, middle-class and well-connected - and that's just the patients: is this the health research culture we wish to see in the UK? Ever since it was established in 2011, the Health Research Authority (HRA) - the UK regulator of health research whose mission is 'to protect and promote the public interest' - has commissioned... Continue Reading →

Newsflash: Could you be a standard bearer for public involvement? Expressions of interest invited. #ppistandards @OfficialNIHR @ResearchWales @publichealthni @CSO_Scotland

The National Institute for Health Research (NIHR) together with its equivalents across the other UK nations - the Chief Scientist's Office in Scotland, Health and Care Research Wales, and Public Health Agency Northern Ireland - has been leading the development of UK national standards to improve the quality and consistency of public involvement. The UK--wide... Continue Reading →

Excellent new guidance published to help charities and pharma work together with the public’s trust @ABPI_UK @NVTweeting

It's high time we got over it. Pretending it doesn't go on is foolish. Suspecting the worst every time they come near to one another is energy-sapping. No one is trying to deny history. But we are in danger of denying others a future if we continue to stand in their way. I mean, of... Continue Reading →

What next for the BBC: ‘Science in Need?’ #BBC #sciencefunding

Yes, wouldn't it be great if the BBC did indeed launch 'Science in Need?' Then, for the first time in history, we could have a public broadcaster encouraging us to 'SIN' and be SINNERS with our donation to science. There is something rather beautiful but perhaps also tendentious about the juxtaposition of yesterday's launch of the BBC's new... Continue Reading →

Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research

I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it. Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful... Continue Reading →

What next in identifying patient priorities for health research? #JLAevaluation

I spent yesterday morning at an excellent event looking at the James Lind Alliance Priority Setting Partnerships (JLA PSPs for short!). #JLAevaluation Started in 2004, JLA PSPs have become a recognised and highly respected method for identifying shared priorities in health research among patients, carers and clinicians.  That they have is a testament to its founders but also the excellent JLA... Continue Reading →

Government pushes forward with review to speed up availability of innovative medicines and treatments

Two posts in one day!  Ah, those were the days when we got two Post Office deliveries a day.... Just to say the Government has published the full terms of reference for its Innovative Medicines and MedTech Review to be headed up by Sir Hugh Taylor who is currently Chair of Guy's and St Thomas's.  Yes, that's... Continue Reading →

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