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 A view about the health secretary’s announcement on healthy volunteers and DNA tests
AMRC
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 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
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 Newsflash: Could you be a standard bearer for public involvement? Expressions of interest invited. #ppistandards @OfficialNIHR @ResearchWales @publichealthni @CSO_Scotland
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 Excellent new guidance published to help charities and pharma work together with the public’s trust @ABPI_UK @NVTweeting
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 What next for the BBC: ‘Science in Need?’ #BBC #sciencefunding
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 Cystic Fibrosis Gene Therapy Trial testament to the cf community as a positive, patient and persistent partner in research
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 What next in identifying patient priorities for health research? #JLAevaluation
Smash, shrapnel and loose change – a mish mash of news from around public involvement and engagement in health research
Here's a few things that I've been collecting and now seems as good a time as ever to gather them together and share them as one. Researchers may wish to note the following exercise that is running throughout universities and institutions to identify barrier to public engagement. It's a repeat of an exercise done by … Continue reading Smash, shrapnel and loose change – a mish mash of news from around public involvement and engagement in health research
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 Government pushes forward with review to speed up availability of innovative medicines and treatments
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 Spend £1 on cancer research and get 40p back every year: what’s not to like?
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 A brief update on NIHR’s review of public involvement in research
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 The medical marathon; a piece to mark the #LondonMarathon2014
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 Fight the good fight: medical research charity advertising slogans
Comment: So what next for care.data?
The fundamental issue at stake here is respect for the citizen. The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper? Many will say that NHS England - who yesterday announced a … Continue reading Comment: So what next for care.data?
My view on that pancreatic cancer ad campaign
The charity Pancreatic Cancer Action have caused a storm with their new 'cancer envy' advertising campaign in which patients are pictured saying things like: 'I wish I had breast cancer.' So if it's shock tactics they were after, and public attention to go with it, then they must be delighted. As must the advertising company … Continue reading My view on that pancreatic cancer ad campaign
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 Musings on #patientdata and: ‘the moral case for public involvement in research is dead, long live…’
Clinician resistance to research may require an arm around the shoulder not a red card
....despite the temptation. Summer means many things for me. One of them is keeping track of the football transfers. Here's hoping that the Eagles do manage to persuade Ronaldo to South London! The comments that managers make about players never cease to amuse me. One of the most common goes something along the lines of: 'He's … Continue reading Clinician resistance to research may require an arm around the shoulder not a red card
Political spotlight on Health Research Authority (HRA) intensifies
I am sure the new Health Research Authority (HRA) can take care of itself. But the expectations being heaped on it by others show no signs of abating. I wouldn't be surprised if tomorrow someone calls on it to cure cancer. If it had been created by a Blair Government it would surely have been … Continue reading Political spotlight on Health Research Authority (HRA) intensifies
The lay summary is dead, long live the lay summary (#A2UComp)
'They can't write for toffee.' 'They' being scientists of course. But like most generalisations, this statement is utter tosh. You only had to be at the 'Access to Understanding' awards (#A2UComp) at the British Library on Monday night to realise that. The lay summaries that I and my fellow judges had been asked to review … Continue reading The lay summary is dead, long live the lay summary (#A2UComp)
At last! A patient-centred statement on the proposed EU Clinical Trials Regulation
First, a brief history of time in the Europe Union (EU). It goes slowly. That's it! For the last two years or so the European Commission has been consulting on plans to revise the European Clinical Trials Directive. The Directive has been in force since 2001. Researchers hate it. To be fair so do many … Continue reading At last! A patient-centred statement on the proposed EU Clinical Trials Regulation
Simon Denegri's Lay Review 