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 →

Spend £1 on cancer research and get 40p back every year: what’s not to like?

Today the All-Party Parliamentary Group for Medical Research holds its summer reception in parliament. This annual event has become an important fixture on the health research calendar. The 'great and the good' assemble to focus on a key issue of the day and to network. At some point in proceedings they will be addressed by... Continue Reading →

A brief update on NIHR’s review of public involvement in research

We have just passed the mid-way point in the 'evidence-gathering' phase of NIHR's strategic review of public involvement entitled 'Breaking Boundaries.'  So here's an unofficial Chair's view. The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR's website here People can at the... Continue Reading →

The medical marathon; a piece to mark the #LondonMarathon2014

What is, I wonder, the equivalent of Noel Coward's lyric 'only mad dogs and Englishmen go out in the midday sun,' which might encapsulate the phenomenon that is the Virgin Money London Marathon? This morning tens of thousands of runners will set out from Greenwich Park as they do every year with high hopes of finishing two, three, four... Continue Reading →

Fight the good fight: medical research charity advertising slogans

Over the last few months, I have been noting down charity advertising copy as I go about London. Here are ten. Notice any trends? Diagnosed with blood cancer, Chloe only has one hope...YOU. Text HOPE.... Anthony Nolan Trust 2013 Elliot is deafblind. He can't tell it's Christmas. Text TOY to....Sense Help us beat cancer sooner... Continue Reading →

Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’

There's a big push on #patientdata at the moment. Leaflets explaining how patient data will be shared in the future are being stuffed through people's letter boxes.  This is part of an initiative called 'care.data.' Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The... Continue Reading →

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