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
ABPI
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
The Govt’s Accelerated Access ‘Innovation’ Review: mid-term report @AccelAccess #medtech
Having sensibly bought itself another 6 months to do the work, last week the Government's 'Accelerated Access Review' published its half-term report. Headed by Sir Hugh Taylor the review is looking at how to get new treatments and technology in the hands of patients quicker. It is an important review and all the better for … Continue reading The Govt’s Accelerated Access ‘Innovation’ Review: mid-term report @AccelAccess #medtech
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
Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
What should we make of the latest figures from INVOLVE and the Health Research Authority (HRA) showing which funders are best at public involvement in research? In a re-run of an joint-exercise first done in 2010, INVOLVE and the HRA looked at the public involvement component of over 1100 research applications that went before research ethics … Continue reading Who are the good, the bad and the ugly at involving the public in medical research? New comparative figures for Government, charities and industry
This autumn we will all be wearing….. ‘stratified medicine.’ New reports by ABPI and TSB
I note that it is London Fashion Week. I look forward to finding out what colours are 'in' or 'out,' what I should or should not be wearing over the next 12 months. Science is no stranger to fashions or trends. All of a sudden you can find yourself deluged with reports and the such … Continue reading This autumn we will all be wearing….. ‘stratified medicine.’ New reports by ABPI and TSB
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
Pharma is just not wired to act in the public interest when the chips are down
It has been an interesting 24 hours for some of our goliaths of research funding. Starting with the positive, Cancer Research UK (CRUK) rolled out its new research strategy this morning: 'Beating Cancer Sooner.' Its bold new vision is to see 75% of people surviving the disease in the next twenty years. That's compared to the 50% … Continue reading Pharma is just not wired to act in the public interest when the chips are down
Thoughts on some of the latest health research stories in the media
I hope you have had a good Easter weekend. There have been three health research stories in the last week that have caught my attention. Each story is significant in its own right. But they also share a common theme around the importance of public participation in research. First up is the research published by King's College … Continue reading Thoughts on some of the latest health research stories in the media
Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
The following is a more polished and slightly amended version [the bits in brackets I didn't say] of the remarks I made at the ABPI/NIHR conference about big data which took place in London yesterday. The title of the conference was: '360 of Health Data - Harnessing big data for better health.' I had written … Continue reading Big data, big stage, cue patients as the leading actor. Remarks at #bigdata2013 on the patient agenda
The truth, the whole truth and nothing but….pharma
Here is a gripping report from this week's 'Adweek' (based in New York) about the new marketing strategies being used by pharmaceutical companies. Don't be put off by the reference to 'Obamacare.' The story is equally applicable to the United Kingdom. For it is essentially a tale about how disease is being re-packaged. Patient data is the new … Continue reading The truth, the whole truth and nothing but….pharma
NIHR and ABPI conference in November on ‘big data’
Click here for details of a National Institute for Health Research (NIHR) and Association of British Pharmaceuticals Industry (ABPI) joint conference on harnessing big data for health gains. Takes place in London on 21st November. The more it is used the more I dislike the term 'big data.' I mean, how to alienate your public in … Continue reading NIHR and ABPI conference in November on ‘big data’
An unleaked memo on sorry pharma and the silly season
Or should that be silly pharma...I don't know. Yes, our colleagues from pharma have stolen the march on everyone else and got the silly season off to a grand old start. I am referring, of course, to the leaked memo from the European and American pharma trade associations dutifully covered by Ian Semple at The … Continue reading An unleaked memo on sorry pharma and the silly season
Patients need apply – European Medicines Agency (EMA) next steps on clinical trial data
The European Medicines Agency (EMA) has published the note of the conference held in London a few weeks ago, about its plans for proactive publication of clinical trial data. It is now setting up five advisory groups and inviting self-nominations from people to join these. You will find the following listing of the advisory groups, plus … Continue reading Patients need apply – European Medicines Agency (EMA) next steps on clinical trial data
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
Life sciences leaders’ outlook is gloomy as the days shorten for the Government to act
So you have to remember that this is an industry/pharma view of life in the main. Nonetheless this second annual survey of 'Life Sciences Leaders' is notable for indicating a trend towards greater pessimism about the future of UK life sciences in the context of an economic downturn etc. The strong message about waning business … Continue reading Life sciences leaders’ outlook is gloomy as the days shorten for the Government to act
Getting touchy over the information revolution
Over the holidays I caught a BBC Radio 4 item about the days of the touch typist. It was one of those gems of broadcasting which looked through a narrow lens to tell the listener much about how the world has changed. It also brought back many memories of my time as a messenger at the old … Continue reading Getting touchy over the information revolution
UKCMRI and other news
In Manchester at the Lowry Centre today for the NHS R&D Forum conference. I have fond memories of Manchester having spent some of my childhood growing up near Wilmslow. Indeed, it was on a hot sunny day such as this that I remember myself and umpteen other seven year olds sitting on a gym mat listening to … Continue reading UKCMRI and other news
Time to open up about industry
Every so often a story and resulting furore crops up in the media about charities, patient groups and their closeneness to industry and, in particular, pharmaceutical companies. Journalists and the public will quite rightly ask: is it in the public interest? I can well remember my first encounter with big pharma in my early days … Continue reading Time to open up about industry
Simon Denegri's Lay Review 