This is a fascination study published by the open access journal ecancermedicalscience. I think it was actually published in November but only came to my attention via Twitter yesterday. It looks at the needs of cancer patients and organisations across Europe when it comes to online information. The results are based on a pan-European survey and questionnaire … Continue reading Cancer patients seeking information about their condition want to know about clinical trials, study shows.
Author: simondenegri
UK clinical trials units go up for review and registration
One of the many good things to come out of the establishment of the UK Clinical Research Collaboration (UKCRC) in the early noughties, is the registration of UK clinical trials units and the bringing together of these units into a network. Registration, which takes the form of an application and then review by an independent international panel … Continue reading UK clinical trials units go up for review and registration
Charities wade in on Leveson and media reporting of science
The Association of Medical Research Charities (AMRC) together with Cancer Research UK and Wellcome Trust have this afternoon published their response to the Leveson inquiry into the culture, practice and ethics of the press. See first item listed under 2012 on this page at the AMRC website. The submission makes good points and I learnt … Continue reading Charities wade in on Leveson and media reporting of science
Neurological Alliance issues wake-up call to Government and NHS over neurology services
The Neurological Alliance which represents over 70 charities in the field has wheeled out its big guns today to highlight the lack of preparedness across the NHS to meet the needs of increasing numbers of people with neurological conditions. It really is wheeling out its big guns such as Steve Ford at Parkinson's UK and … Continue reading Neurological Alliance issues wake-up call to Government and NHS over neurology services
[The definite article] and why it stands in the way of a definitive plan for UK science
****you might also like to read William Cullerne Bown's analysis of the Science Minister's speech referred to in this blog and which appeared on the same day as that below*** Yesterday the Royal Society posted on its website the full text of Lord Rees' Christmas Lecture to the Science and Policy Research Centre. Its worth a … Continue reading [The definite article] and why it stands in the way of a definitive plan for UK science
Obama echoes Nixon’s ‘war on cancer’ with pledge to Alzheimer’s families
This piece from Forbes Magazine is worth reading as a critique of the Obama Presidential Advisory Group draft framework on Alzheimer's published this week. The Group have set a goal of effectively treating and preventing Alzheimer's by 2025. Obama and Nixon would make strange bedfellows. But the last paragraph of the article is perhaps the most salient in pointing … Continue reading Obama echoes Nixon’s ‘war on cancer’ with pledge to Alzheimer’s families
Article by Cancer Research UK Chief Executive, Harpal Kumar
publicservice.co.uk is running a piece today by Cancer Research UK's Chief Executive, Harpal Kumar. I thought his second bullet point under policy priorities re: enabling patient groups to contribute to health challenges quite interesting. It would be good to understand a bit more what he means by this. Cancer Research UK is more research funder … Continue reading Article by Cancer Research UK Chief Executive, Harpal Kumar
Entitled to a title? Should we better recognise members of the public and patients involved in research?
Various reports today about the Secretary of State for Health, Andrew Lansley MP's, statement in response to a question today in the Commons that he is working to introduce an 'effective compliance regime' to ensure local NHS organisations implement NICE recommendations. Those with children will no doubt empathise. I'm not sure that as a statement … Continue reading Entitled to a title? Should we better recognise members of the public and patients involved in research?
NHS Future Forum talks sense on patients and medical records: i.e. we need a plan!
Much will be written about the NHS Future Forum's report out today. And a lot of it will be preoccupied with its recommendation that health professionals should proactively give patients all-round health advice. Personally, I think it a good idea although you'd have thought the Forum has advocated 'in your face healthcare' judging by some of … Continue reading NHS Future Forum talks sense on patients and medical records: i.e. we need a plan!
Research is for life: making research part and parcel of the patient journey
I was very privileged to be asked to give the Furlong Christmas Lecture a few weeks ago. I hope this doesn't seem egotistical but here's the text of that lecture amended with useful links etc - it touches on and rehearses themes that will be familiar to those of you who have visited the blog … Continue reading Research is for life: making research part and parcel of the patient journey
New funding to support adoption of medical technologies in the NHS
NIHR's Invention for Innovation (I4I) has this week announced a new £15million Challenge Awards Programme to support the adoption of innovative medical technologies in the NHS. More details here.
BMJ talks tough on clinical trial data and the public interest
The BMJ publishes several papers today looking at the harm being done to research, patient care and the public interest by the incomplete disclosure or withholding of clinical trial data. Click here for the BMJ's editorial written by Dr Richard Lehman from Oxford University and the journal's clinical epidemiology editor Dr Elizabeth Loder. An example of the … Continue reading BMJ talks tough on clinical trial data and the public interest
Medical records and health research: one good right deserves another
It will be the single most important and transformative development in medical research this year. It will change the relationship that patients have with their health service and fundamentally re-draw the relationship between the NHS and its partners including our healthcare industries. It's impact on the culture of the NHS and the way it is … Continue reading Medical records and health research: one good right deserves another
Your health records save lives – in stores.
Given the debate and the importance of this issue in the coming year, here is a photo of the leaflet 'Your health records save lives' on the leaflet rack at my GP surgery.
Small research charity demonstrates power of asking questions
Today, we travel to the Lake District.... The British Tinnitus Association (BTA) is a small medical research charity which I had intermittent contact with while Chief Executive at the Association of Medical Research Charities (AMRC). It has a proud history of supporting research. Not unusually for charities of its size and type, while it represents … Continue reading Small research charity demonstrates power of asking questions
BBC Radio 4’s ‘The Report’ looks at whether the UK can be a world leader in clinical trials
Airing tomorrow (Thursday 22nd December) at 8pm on BBC Radio 4 , investigative reporter, Simon Cox, looks at whether the UK can be a leader in clinical trials.
Stem-cell network closure feels premature and short-sighted
The research councils have decided to end funding for the UK National Stem Cell Network (UKNSCN) it has emerged today. I have covered the work of the UKNSCN before on this blog. It had its faults but my overall impression was that it added value to the debate. A review of its work would seem … Continue reading Stem-cell network closure feels premature and short-sighted
Obama goes troubleshooting on clinical trials
Is it me or does anyone else think that No 10 could have perhaps chosen more wisely its choice of title for the new army of individuals who David Cameron says will help 'trouble' families: 'troubleshooters' doesn't sound quite right? This only a week after No 10 made a complete hash of the 24 hours … Continue reading Obama goes troubleshooting on clinical trials
How’s your NHS Trust doing in the research league tables? Is Leeds the Man City of NHS Research? Does Bridgewater deserve the hairdrier treatment?
So NIHR CRN CC/The Guardian have today published a league table of how each NHS Trust is performing in research as defined by the number of research studies and the number of patients taking part. I believe this is the first time such a table has been compiled and a thoroughly good thing it is … Continue reading How’s your NHS Trust doing in the research league tables? Is Leeds the Man City of NHS Research? Does Bridgewater deserve the hairdrier treatment?
Index on Censorship data debate report and video
You can read a report of last week's Index on Censorship's debate about data starring Mark Walport and Baroness O'Neill among others, here. You can also see a video of the debate on their Facebook site but, of course, you'll have to sign-in to Facebook first. One can onlyhope they informed everyone first and this is not some sort of clandestine CCTV … Continue reading Index on Censorship data debate report and video
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