I've collected several interesting news stories over the last few weeks, regarding proposed changes to the way that health research is regulated in the UK, changes to the way medical scientific data is shared, and also a call from the Patients Association to improve the way that chronic pain conditions are managed.
There's no particular relationship between these 3 themes, but rather than create 3 separate threads I thought it would be easier to combine them all together. There's also nothing ME/CFS-specific about any of this news, but it could all have implications for us in the future...the changes on the way under the current government seem to me to bring both threats and opportunities for us. I won't analyse those implications in depth myself, just now...I'll leave it to others to consider how all this might affect us and how we might take advantage of these trends...
Composite Health Research Agency: Proposal for a "One stop shop" for health research
The Academy of Medical Sciences has called for a new body to regulate all health research in the UK, arguing that 'clearing red tape' will make it quicker and cheaper to approve projects. The new body would be the only place giving ethical approval for trials. "It takes an average of 621 days between awarding a research grant and the first patient taking part in the trial. We've built a Rolls Royce and are driving it down a cart track."
This development seems to me both very promising and also very worrying! On the one hand, I do agree that there's an urgent need to dramatically improve the efficiency of the research process (and this applies across the medical research world). Time wasted in ethical approvals stages, and in sourcing patient samples etc, is a huge and obvious inefficiency. (Only Wessely, it seems, has the power to cobble together 'studies', complete and publish them, all in less time than it takes to culture a virus). But on the other hand, the dangers to us of a 'one stop shop' for approval should be equally obvious: a centralising of control over approvals could make it much easier to block all 'undesirable' avenues of research, and tighten the grip of The Lobby over policy. Though I'm not sure we really have anything to lose, given where we are now...
http://www.bbc.co.uk/news/health-12152954
http://www.guardian.co.uk/science/2011/jan/11/medical-research-drug-trial-approvals
http://www.onmedica.com/newsarticle.aspx?id=87e1854d-d525-4063-900c-642ec0a891bb
http://www.pharmatimes.com/Article/...esearch_Agency_recommended_in_AMS_report.aspx
Call for greater sharing of research data
17 international research funding agencies published a statement pledging to support "timely and responsible sharing of data". Essentially they are indicating that they will expect data from research projects they fund to be shared openly.
This trend seems to me far more unequivocally positive. It's really Climategate that has done more than anything else to help wake up the scientific community to the vital importance of open access to research data, but this trend was already underway and seems to be accelerating now. The new head of the Royal Society was on TV earlier this week addressing the crisis in public confidence in science (my verdict was that he identified roughly half of the problem, and half of the necessary solutions, extremely well, but failed to identify the insidious corruption of the scientific community by industry funding as the major underlying cause of the complete collapse of public trust in science) - but another trend that's feeding this sort of development is the possibilities opened up by the internet: for 'crowds' to be able to analyse bioinformatic data themselves, and perhaps uncover novel scientific findings. That means us! - many projects are underway within our own community to try to bypass the medical research system that has failed us so miserably, and having almost given up hope of the authorities doing anything to help us, to attempt to 'do it ourselves'. So any moves to open up access to research data have my wholehearted approval.
http://www.inpharm.com/news/110112/public-health-research-data
http://www.guardian.co.uk/commentisfree/2011/jan/11/medical-research-data-sharing
Significant failings in care of Chronic Pain
A Patients Association survey of sufferers of chronic pain found "shocking" failings in the provision of support. Chronic pain was defined as lasting longer than 3 months - so it's a category that comfortably includes every single one of us here - though we are only a small subset of that category: an estimated 7.8 million people are affected in the UK - a staggering figure! The survey found there is just one pain specialist available for every 32,000 sufferers. Less than a quarter of sufferers had been referred to a pain specialist, about a third are disregarding the prescription advice of their GPs, and the Department of Health recognised that the wide variation in the standards of care received was "unacceptable".
Whatever response is made to this problem, of course there's very little chance that any of it will bring any benefits to us. And it seems notable that this chronic pain they are describing is a mere subset of the problems we experience - most of us have several if not all of the chronic pain conditions mentioned in these articles, for life, and with little or no support from anyone. So if the treatment of the wider problem is "shocking" - and it is - what adjective should we use to describe our situation?!...
http://www.bbc.co.uk/news/health-12155277
http://www.pharmatimes.com/Article/...ificant_failings_in_care_of_chronic_pain.aspx
There's no particular relationship between these 3 themes, but rather than create 3 separate threads I thought it would be easier to combine them all together. There's also nothing ME/CFS-specific about any of this news, but it could all have implications for us in the future...the changes on the way under the current government seem to me to bring both threats and opportunities for us. I won't analyse those implications in depth myself, just now...I'll leave it to others to consider how all this might affect us and how we might take advantage of these trends...
Composite Health Research Agency: Proposal for a "One stop shop" for health research
The Academy of Medical Sciences has called for a new body to regulate all health research in the UK, arguing that 'clearing red tape' will make it quicker and cheaper to approve projects. The new body would be the only place giving ethical approval for trials. "It takes an average of 621 days between awarding a research grant and the first patient taking part in the trial. We've built a Rolls Royce and are driving it down a cart track."
This development seems to me both very promising and also very worrying! On the one hand, I do agree that there's an urgent need to dramatically improve the efficiency of the research process (and this applies across the medical research world). Time wasted in ethical approvals stages, and in sourcing patient samples etc, is a huge and obvious inefficiency. (Only Wessely, it seems, has the power to cobble together 'studies', complete and publish them, all in less time than it takes to culture a virus). But on the other hand, the dangers to us of a 'one stop shop' for approval should be equally obvious: a centralising of control over approvals could make it much easier to block all 'undesirable' avenues of research, and tighten the grip of The Lobby over policy. Though I'm not sure we really have anything to lose, given where we are now...
http://www.bbc.co.uk/news/health-12152954
http://www.guardian.co.uk/science/2011/jan/11/medical-research-drug-trial-approvals
http://www.onmedica.com/newsarticle.aspx?id=87e1854d-d525-4063-900c-642ec0a891bb
http://www.pharmatimes.com/Article/...esearch_Agency_recommended_in_AMS_report.aspx
Call for greater sharing of research data
17 international research funding agencies published a statement pledging to support "timely and responsible sharing of data". Essentially they are indicating that they will expect data from research projects they fund to be shared openly.
This trend seems to me far more unequivocally positive. It's really Climategate that has done more than anything else to help wake up the scientific community to the vital importance of open access to research data, but this trend was already underway and seems to be accelerating now. The new head of the Royal Society was on TV earlier this week addressing the crisis in public confidence in science (my verdict was that he identified roughly half of the problem, and half of the necessary solutions, extremely well, but failed to identify the insidious corruption of the scientific community by industry funding as the major underlying cause of the complete collapse of public trust in science) - but another trend that's feeding this sort of development is the possibilities opened up by the internet: for 'crowds' to be able to analyse bioinformatic data themselves, and perhaps uncover novel scientific findings. That means us! - many projects are underway within our own community to try to bypass the medical research system that has failed us so miserably, and having almost given up hope of the authorities doing anything to help us, to attempt to 'do it ourselves'. So any moves to open up access to research data have my wholehearted approval.
http://www.inpharm.com/news/110112/public-health-research-data
http://www.guardian.co.uk/commentisfree/2011/jan/11/medical-research-data-sharing
Significant failings in care of Chronic Pain
A Patients Association survey of sufferers of chronic pain found "shocking" failings in the provision of support. Chronic pain was defined as lasting longer than 3 months - so it's a category that comfortably includes every single one of us here - though we are only a small subset of that category: an estimated 7.8 million people are affected in the UK - a staggering figure! The survey found there is just one pain specialist available for every 32,000 sufferers. Less than a quarter of sufferers had been referred to a pain specialist, about a third are disregarding the prescription advice of their GPs, and the Department of Health recognised that the wide variation in the standards of care received was "unacceptable".
Whatever response is made to this problem, of course there's very little chance that any of it will bring any benefits to us. And it seems notable that this chronic pain they are describing is a mere subset of the problems we experience - most of us have several if not all of the chronic pain conditions mentioned in these articles, for life, and with little or no support from anyone. So if the treatment of the wider problem is "shocking" - and it is - what adjective should we use to describe our situation?!...
http://www.bbc.co.uk/news/health-12155277
http://www.pharmatimes.com/Article/...ificant_failings_in_care_of_chronic_pain.aspx
