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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 – Cancer Research UK cinema advert late 2013
In the fight against cancer every moment counts
Because we’re not just fighting cancer
We’re racing against time
To do more research
To find more cures
To save more lives
One day research will bear cancer
And the sooner you give
the sooner that day will come.
Cancer Research UK Jan 14
We’ve found a cure for blood cancer. Pleased to meet you.
Anthony Nolan Trust
Conquer the London to Brighton Bike Ride
British Heart Foundation (BHF) tube advert jan 14
Cancer doesn’t care if you put this in the bin
(Cancer Research direct mail shot) feb 2nd 14 at home
Because no one should face cancer alone Feb 2014 train poster Macmillan Cancer
These things happen to my mother (‘other people’ crossed out) Breast Cancer CampaignMarch 2014 Warren St tube
I wish I had breast cancer
Newspaper ad – Feb 14 – Pancreatic Cancer Action
So sang The Beach Boys who were on Radio 2’s ‘In Concert’ this week. Not that I’m a great fan but it seemed apposite given my week. This has involved visits to TrialReach, Oxford (well, virtually!) to discuss plans for public involvement in the Biomedical Research Centre there, my good colleagues at BioMedCentral and, tomorrow, Leeds (see below). To think I used to spend three weeks every autumn to attend the party conferences. It’s like regaining a bit of my life again.
But before I get into the meat of this blog, I just thought I’d draw your attention to a presentation on the ‘Caldicott2′ website (this is the review looking at information governance in the NHS including use of patient data for research purposes). Made by Dame Fiona Caldicott earlier this month it shares some early findings from the review and also shows the next steps for this important piece of work. Look under the Southern Informatics listing on this page.
I’m off to Leeds tomorrow to speak at an NIHR regional event – the first of four happening over the next few weeks – aimed at strengthening dialogue with NHS Trust R&D Managers against the background of much change in the NHS. I am looking forward to getting to know this audience better and hope that, during my small walk-on part, I can convey the important role they play in delivering research which will lead to better outcomes for patients. I think I am erroneously listed as ‘a patient’ on the programme and am wondering whether that means I take on the even more misleading definite article on the day, and am then definitive in every sense of that word thereafter. Let me worry about that one.
I notice that several organisations have been pushing out their responses to the NHS Commissioning Board Draft Mandate (it being the deadline). The King’s Fund document is compelling as ever although, as always after reading their documents, I felt a bit as if I should have taken that further degree after all. It has a strong statement on ‘shared decision-making’ which succinctly conveys what this should be in practice.
The Association of Medical Research Charities (AMRC) has joined forces with other research funders to put in a very comprehensive response focusing on the research and innovation objectives in the Mandate. Some good ideas in there including the point about better training for NHS staff on research, a point that was also made by Jonathan Sheffield (NIHR Clinical Research Networks) during The Guardian debate on innovation this week. It’s certainly true that if patients are to see choice become a reality in research we need to do much more to make sure that NHS staff are ‘research-aware.’ Meanwhile I thought Cancer Research UK’s response was helpful about ‘patient choice’ saying (briefly) what needs to happen to make it work and what they might be able to contribute. I think this is the key – organisations understanding that in this new environment what is pushed from the outside is going to be as, if not more, important, than what is put out from the centre. And I sometimes wonder whether the sense of shared responsibility has quite sunk in in some quarters.
Tangentally you might want to check out the blog I have written about patients and Academic Health Science Networks (AHSNs) for the Greater Manchester (AHSN) website. Last week at the INVOLVE annual symposium for members it was interesting to hear people talk about their different experiences of working with AHSNs. Helping support their work in trying to avoid groundhog day in these new organisations, is going to be a focus for the future I suspect.
This afternoon I tweeted about the national portal for people with dementia and their carers to register their interest in taking part in research and be informed about future trials. It is being developed by DeNDRoN and will be developed shortly. This really could be the most significant development in helping to nurture a research-active patient community since the Alzheimer’s Society set up QRD in the 90s. The opportunity of the PM’s Dementia Challenge to give it the best start in life should not be missed and I’m looking forward to chairing the public involvement group that is going to help guide the portal’s development.
Seem to be on the road a lot from next week as well and look forward to meeting people in Birmingham at the next NIHR Regional R&D Day, the Mental Health Research Network (MHRN) conference and other places. Reminds me I must buy Ben Goldacre’s new book to read on my travels. And this from the US Federal Drugs Administration today seemed relevant.
Divvying up the costs of conducting research in the NHS funded by medical research charities is an intricate business. Who pays for that research nurse, their time in administering the extra treatment required in a clinical trial, the procedures and equipment needed as part of its conduct, the oversight and governance needed to ensure that things are done properly and with patient care uppermost in mind? When do these costs begin and end?
For both the NHS and charities the concern is to be able to demonstrate appropriate use of respective taxpayer or donor funds, for the purpose for which it has been intended; to have a system for the apportionment of costs which recognises the value and contribution of both partners to making trials happen and does not inadvertently disincentivise either because of perceived unfairness.
It is an issue which has been tussled over for a considerable period of time with the latest discussions dating back to well before I left the Association of Medical Research Charities (AMRC).
Happily the Department of Health and AMRC have now reached agreement and the final document – entitled AcoRD for short – can be found on the Department’s website. The document – which came out late on Friday – takes a principle-based approach and includes case studies to guide decision-makers.
It is an important document. Consistent and coherent implementation overseen by both will be crucial. The linkage of the application of the rules so firmly to those charities who have AMRC membership, is an important amplification of the status AMRC now holds in ensuring quality and excellence in the sector.
UPDATE & FURTHER COMMENT
There’s a very helpful bullet point summary of the budget measures concerning health research on NIHR’s website.
Having only just landed in the office after an afternoon following developments while in and out of meetings, I would add the following to my comment earlier today:
‘Credit where credit is due. After months of pushing by medical research charities and our partners in health research, one can only applaud the Government for coming forward with a comprehensive set of measures which will ease regulatory issues, speed up the research process and improve transparency.
I am very pleased that the proposals include a commitment to tackle a number of long-standing issues such as e-health records research. Also, that political weight is being put behind the need to make information about clinical trials accessible to patients through the UK Clinical Trials Gateway. This ‘front door’ to research for patients is extraordinarily important if we wish to see the patient population more engaged in health research and participate in trials.
While the headlines will undoubtedly concentrate on eye-catching details such as the creation of a Health Research Agency, I believe that one of the most important steps outlined is that aimed at incentivising research at a local level. It will help to ensure that the health system begins to work to the advantage of health research.”
George Osborne has announced the 2011 budget, with interesting news for science, and medical research in particular. As trailed, this includes £100 million capital funding for science institutions and measures to make the UK more attractive to small and medium sized enterprises, key members of the life sciences sector.
The growth strategy, published alongside the budget, published alongside the budget, announces plans to act on the Academy of Medical Sciences’ recommendations to improve the regulation of health research in the UK, including establishing a single Health Research Agency to regulate research and working to streamline the process of conducting clinical trials. It also announces action to make patient data safely and securely available for medical research and to establish a Cell Therapy Technology and Innovation Centre.
My first impressions of today’s announcements?
Medical research charities and patients will very much welcome the steps outlined by the government to reduce health research regulation and help clinical trials get off the ground more quickly. They are important steps towards ensuring patients will benefit from future innovations in health and that the UK remains a world leader in research.
The news that Pfizer is to close its R&D facility in Sandwich in Kent has shaken us from our sleepy winter hollows.
I’ve been watching the reactions and comments come over the wires as I am sure you have. This is clearly a company going through considerable transition as it tries to change with the times – see the Reuters round-up of their results today for a good insight. And essentially its the sort of hard-headed business decision that US companies seem prone to take about their global operations when restructuring.
So, a comment on Pfizer’s view of the UK as a place to do science? No. As a place to do business? Possibly.
But perhaps we should treat it as though it were the former. For, ultimately, the impact is the same. The loss of a world-class R&D facility in the UK. As others have said today, it shows we need to up our game in how the Government and those across research work with industry.
Meanwhile…and no link between the stories is intended…I’ve been absorbing today’s report by the European Commission (see also BBC News) ‘ Innovation Union Scoreboard’ It looks at the research and innovation performance of the 27 member states of the European Union. The basic story is that the UK is rated an ‘Innovation Follower’ (just outside the ‘Innovation Leader’ category) and is playing catch-up with those ahead of it at a slower rate than its peers in the ‘Follower’ group.
If you look at the country profile for the UK on page 50 it says some complimentary things about the UK having an ‘open, attractive, research systems’ and the stats show we are above average in the number of non-EU doctorate students (relevant to the immigration debate surely) and public R&D expenditure. On most of the remaining indicators the story is not so good.
The European Commission, whose way with words is to be eternally admired, says the report is evidence of an ‘Innovation Emergency.’ I am not sure what to do in an ‘Innovation Emergency’ are you? Other than look for my patent box of course.
Ahead of next week’s Academy of Medical Sciences (AMS) much anticipated report on medical research regulation I see The Times and Sunday Times (both paywall) have published pieces this weekend by scientist Professor Colin Blakemore and journalist Brian Deer respectively, offering different perspectives on the issue of regulation.
If you are looking for further background on this issue, a reminder that you can read more about patient views on research regulation in the independent report published by AMRC/INVOLVE on 20th December 2010. And AMRC’s two written submissions to the Academy’s review can be found on our website.
The Academy’s pages on the review are available here.
A piece of good news with which to begin the New Year. PharmaTimes is reporting that the number of patients participating in clinical trials jumped by 67% last year to over half a million (compared to over 300,000 in 2009).
The new CEO of the National Institute for Health Research Clinical Research Network Co-ordinating Centre (NIHR CRN CC) – which provides the machinery for how clinical trials are delivered in the UK, Jonathan Sheffield is quoted as pointing to the involvement of the wider NHS (not just teaching hospitals) and increased public awareness as key factors behing the increase.
A rather interesting piece of news I thought given a) today’s news about the ‘polypill’ trial going ahead, b) the impending Academy of Medical Sciences report on medical research regulation and, on a more personal note, c) that these first few months of the year shall see me busy working with patients and colleagues in NIHR CRN CC to ensure an even better plan for the implementation of patient and public involvement across the UK’s clinical research networks.
Jonathan alludes to this work in his interview and it is an area where medical research charities have had, and will continue to play, an important role – assisting in patient recruitment to trials, raising awareness among patient constituencies of the importance of research, as well as funding such trials themselves of course. As NIHR figures showed last year, 37% of all clinical studies on their portfolio are funded by charities.
Hopefully the Academy’s forthcoming report will show the way to how we might build on this success.
Those who visit this blog regularly will know that we’ve been following progress with the plans to build the UK Centre for Medical Research and Innovation in London ever since our first post. So, in what feels like an early Christmas present for science, it is good to be able to report that yesterday Camden Town Hall councillors gave their go-ahead to the project.
The Wellcome Trust has a straightforward press notice on it (they are one of four partners involved, the others being Cancer Research UK, UCL and the Medical Research Council) but I can highly recommend the UKCMRI website as well where you can get a better idea of what the centre will look like and what it will do. Let’s hope the new centre will be snowproof unlike the rest of London.
In other news this week..this hasn’t been picked-up very widely but the Prime Minister’s Office announced the membership of the re-constituted Council for Science and Technology which was set-up in the early nineties (and re-launched in 2007) to advise the PM on cross-cutting issues of strategic importance. The Council is also advertising for ten independent members.
Thw word is that Monday looks like the day when the Government will announce the science budget allocations…and I also hope that we can publish our independent report of the AMRC/INVOLVE patient workshop on research regulation.
I can’t think of a better way to end the week than to announce our 125th member charity. ‘Autistica’ is the largest UK charity raising funds for medical research to improve diagnosis, advance new treatments and discover the causes of autism.
The charity has been funding medical research for 6 years, and funds project grants, programme grants, equipment grants, clinical trials, lectureships, fellowships & PhD studentships. In 2009 the charity’s expenditure on medical research was over £600K and the charity has 13 current grants totally almost £2M.
Click on their logo if you wish to go straight to their research pages.
We are playng ‘Ode to Joy’ in the office to celebrate as we hope they are too.
Whether you like your scientists to be medallion wearers or medal winners or indeed both is I suppose a matter of personal preference.
In one of those strange juxtapositions in life I chanced across news of this month’s US GQ feature (no, I don’t read it) on ‘Rock Stars of Science’ shortly before leaving my office yesterday evening to attend the Royal Society’s anniversary day reception. Lord Rees gave his farewell address as President before the annual award of the Society’s medals and prizes to, among others, Sir David Cox (Copley Medal) for his pioneering work on statistics.
Much as I like a good flick through a magazine I can’t pretend I wasn’t flattered to have been asked along as a guest and to have been rather taken with the dignity of the event. But I suppose there is a place for both.
To mark the end of its 350th Anniversary, the Royal Society also published its ‘Science sees further’ collection of 12 articles written by Sir David Attenborough and 11 other esteemed authors explaining how science will address some of the most challenging issues in society such as ageing. It perhaps shows what a mere mortal I am that I remain baffled by more humble and humbling questions such as why my train can’t travel nine miles into central London in the snow, or why the ‘o’ keeps sticking on my home laptp.
However, to end on a serious point, I have noticed a clutch of recent articles showcasing new UK facilities for science in the last few days – all of which charities have had a significant hand in making happen: the new Edinburgh diagnostic imaging centre (Wellcome Trust and British Heart Foundation (BHF) and the opening of the world’s largest early clinical trials centre at The Christie Hospital in Manchester (Cancer Research UK). It is an often overlooked fact that as well as scientists and research projects, UK research charities also play a large role in the funding of our science infrastructure. Another more obvious example is the new UKCMRI centre to be built in London whose Director and Chief Executive, Sir Paul Nurse, is the incoming President of the Royal Society.
The reality is that our scientists will likely struggle to win medals or medallions in the future without state-of-the-art facilities in which to work. And it is a credit to charities that they are so often the ones breaking the ground where ground-breaking work can occur.
Monday saw the Science Mnister, David Willetts, and Health Minister, Earl Howe, announce what are being called therapeutic capability clusters (research consortia) at the ABPI/BIA conference in London. PharmaLetter has an article on it and what I think is the formal news release can be found on Pharma Live.
Don’t be fooled by the PR speak which makes it sound as though this entity has just been launched. As the MRC comment implies, work on getting this thing off the ground has been going on for months – well before the General Election. But going public is significant in the sense it means that the potential hurdles standing in the way of its feasibility – like pharmaceutical companies sharing their data – have been overcome.
It’s unfortunate – he says in a rather grumpy way – that no one seems to have mentioned the involvement of some leading charity funders up to this point such as Arthritis Research UK. In actual fact it is worth pointing out that the Office for Strategic Co-ordination of Health Research (OSCHR) has been very pro-active in engaging releveant charities in the two therapeutic areas concerned – inflammatory and immune diseases.
On the back of the spending review I would also say that yesterday’s news is quite an important political vote of support for OSCHR and it’s role in engineering partnership working for clinical research. In the run-up to 20th October there were some whispers that OSCHR might change/migrate/vanish etc etc. But this very tangible initiative and the up-front way in which it is being badged with OSCHR’s name by Ministers indicates that its place in the world is much more scure.
A change is as good as a rest they say. So I am delighted that our former Chair (as well as former Director of the Wellcome Trust), Dame Bridget Ogilvie, took up my invitation to give us her perspective on the spending review and its implications. Its closing sentiments about the development of young scientists will strike a chord with many I feel…..
Dame Bridget Ogilvie
At last we know the worst now that the Chancellor of the Exchequer has spoken. It’s great news that he thinks that investment in scientific research is necessary for the future growth of the economy. So the good news is that the science budget will remain at its current level of £4.6b per annum over the next 4 years, although the research councils and universities will be required to deliver efficiencies worth £162 million a year by 2014-15.
In addition, the Government has confirmed that they will give £220m in capital funding from the Department of Health budget to UKCMRI, the consortium which includes the Medical Research Council, Cancer Research UK, the Wellcome Trust and UCL. Also, the Government will maintain its commitment to fund developments at the MRC’s LMB, Pirbright and Diamond facilities.In the nation’s present financial predicament, all this is wonderful news and far better than most of us had anticipated.
But….as the cost of scientific research always outruns the general level of inflation, over this time period the value of these funds for science will fall. We must also remember the wider context of overall funding for universities falling from £7.1 billion to £4.2 billion. Although this settlement excludes research funding, its ultimate impact remains to be seen. However, I am sadly sure this will affect the research productivity of universities.
We know too that many research funding charities have already seen a reduction in their ability to fund. When money for research was reduced in the 1980’s and 90’s, the Wellcome Trust’s funds were increasing exponentially which ensured that the UK remained a real force for medical research internationally. What Wednesday’s announcement means for charities and other funders we don’t know yet, but many anticipate that it will increase the number of applications for a grant that they receive. So even with this relatively good news, the competition for funds, already severe, will get worse.
What to do?
We know that failure to support the young when times are hard has bad long term consequences. We are still feeling the effect of poor levels of research funding in the 1990’s because the age cohort beneath the present leaders is below strength which is a real worry. We also know there is an increasing tendency to give very large grants to existing leaders with consequent reduction in funds for the less established, and nowadays scientists often don’t get their independence before they are 40+. My generation became independent 10 or more years earlier.Many excellent people leave a research career when they feel they are unlikely to become independent until after the age of 40.
Funders rarely pay attention to the way scientific leaders lead and manage their group. There is evidence that once groups exceed 10-12 in number, productivity drops. Therefore, leaders and funders need to address this issue not only by making sure that developing scientists get a fair share of available resources. But also that they are properly managed and not unfairly used by their seniors to the advantage of the leaders but the disadvantage of the whole scientific community.
So understandably the debate goes on whether we should be drinking champagne or lucozade this morning after yesterday’s announcement. But I rather liked this sobre assessment by Jenny Rohn, originator of the Science is Vital campaign which has appeared in The Guardian.
The New Scientist has also published a detailed analysis penned by Imran Khan from the Campaign for Science and Engineering (CaSE).
But Jenny Rohn’s piece in particular struck a chord with me. It reminded me of something someone once taught me as a young campaigner: that you should never underestimate the importance of the moment when those you are trying to influence begin to share the same language as you.
In the meantime I’m going to have a nice cup of tea as I recover from some sort of CSR inspired bug.
I can only think of turning the last few hours of trying to absorb today’s announcements and figures in the following way:
- Surely even the harshest critic would have to acknowledge that, comparatively speaking, science fared well in today’s spending review. It was certainly spared the savage cuts that we are seeing elsewhere and that were long muted.
- The fact that the basic components of the funding regime remain intact means continuity and stability – qualities often overlooked or indeed deliberately attacked in politics but crucial to productivity.
- The ring-fencing of the science budget, not just because of the protection that it affords, but because it helps to ensure transparency and scrutiny of the science budget.
- The fact that the government has listened and an important argument about the role of science in the economy and society was won with HM Treasury – it by no means seemed that way just a few weeks ago.
- The commitment to the Medical Research Council (MRC) and maintaining its budget ‘in real terms’ and also to big ticket items like UKCMRI.
- The strong narrative in support of clinical research generally.
- The coalescence of many voices in science behind a common aim…as necessary in good times as well as bad
The not so good
- A 10 % cut in real terms will still be painful. Even with the sort of efficiency measures recommended by the Wakeham report some surgery is going to be required somewhere.
- What this means in terms of our international competitivenes.
..but, as said, it could have been far worse.
- The first is the pernennial worry for charities about the settlement for the Charity Research Support Fund (CRSF) under the QR settlement which has yet to be hammered out. It is a key lever for our involvement and underpins our partnership with universities. So, plenty of negotiations to be had yet.
- The second is that charities will undoubtedly come under pressure to fund more research at a time of less resource. Competition will be fierce. This will come with its own associated stresses as we tried to point out in our letter to The Times last week.
- With less news forthcoming about other research councils some have already intimated the need to ensure what happens here does not undermine interdisciplinary research and partnership.
- ….and the great unknown is the extent to which the Browne report recommendations re: tuition and teaching will have a knock-on impact on science and future generations of scientists.
What happens next?
I think the coalesced lobby needs to push on now. The near-term objective must be to make sure the forthcoming growth white paper translates today’s statement of intent by the Coalition Government into a cohesive plan.
In flying one is taught how to use the circle of uncertainty principle when lost: find a fixed landmark and circle until one can identify where one is by reference to your map.
The run-up to today has felt a little like that. We have had a fixed landmark in the CSR. Now, at least, we know how much fuel we have on board (even if it is not as much as we would like). And it looks likely there is a place to land. Doing so safely and in one piece is the next and perhaps hardest part to deliver.
We are packing up. No, no, no, not in that sense. It is just that we are moving office in a few weeks.
I am ashamed to say that I am the last of our team to begin the task of separating the recently aquired detritus from the must-keep documents that tell something of our history. But I am already unearthing a few gems.
Yesterday evening I stumbled across the annual ‘handbooks’ that we published in the eighties and nineties. These guides list our then member charities along with details of the grants and types of project each of them funded (details we now publish online). All contain a short foreword. Curiosity made me look at those from the early eighties:
1983 – ‘…there is no doubt that, generally speaking, university research is well-served by the charities. The funds available not only provide a significant contribution to the overall level of funding, but are very effective in the way they can provide relatively small amounts of funding when and where this is most needed.’
1984: ‘There is widespread concern that research institutions have been weakened considerably during the last few years. The charities have responded positively to help support and suatain the biomedical research base in the UK. It will be noted that over 30% of the member charities have disbursed monies in excess of their income during 1983. This is an exceptional response ata a difficult time.’
1985: ‘….there can now be little doubt that the dual support system of medical research in the UK is very shaky and there would seem to be a shift in government priorities from the public to the voluntary sector in maintaining the research base in our universities and teaching hospitals…Indeed, it would seem that the only growing contribution to medical research in real terms is that provided by the voluntary sector…’
and 1986: ‘ There can be no excuse for Government to give less; rather we would hope that the evident interest and concern of the British communitywould be reflected in a more generous allocation of public funds to the MRC…’
The hardening of their tone matches the parsimonious treatment of science during Margaret Thatcher’s first and second terms in office. But how easily they could fit into the discourse of the last few months.
Tomorrow sees the Comprehensive Spending Review (CSR) announcement. I suspect it will be a day largely about numbers big and small. But assessing what it means in practical terms will be more difficult. Don’t believe what the Government says about CSR being sorted, there’s a whole lot more wheeling and dealing to be done about how the Departments slice up the budgets. Tomorrow will feel a little like being served a rather burnt creme brulee. Every sense will tell us how unappetising it is as a dish but we won’t actually know until we have broken through the crust. And we will need something bigger than a teaspoon to do that.
After tomorrow, and sooner rather than later, we will need to look beyond the numbers and understand the driving philosophy behind them if we are to lead science properly in the coming years. A number of political commentators have already written that the deficit has been a gift to a Coalition Government intent on radically restructuring government and society. I suspect that science and technology will not be left out of this and we might get some better idea of the philosphy when the Government publishes its growth paper in the next few months.
Last night I stumbled across a paper by David Edgerton and Kirsty Hughes, and first published in 1989, entitled ‘ The poverty of science: A critical analysis of scientific and industrial policy under Mrs Thatcher.’ (1) They unpeel and help us understand that administration’s approach to science by making us see the relevance of the wider political contex, what they call a central policy agenda of ‘freeing private enterprise, of reducing intervention and of cuts in public expenditure’ – of re-shaping a slimmed down state to better serve industry. It is reminiscent of what we are seeing today as Aditya Chakrabortty wrote in The Guardian yesterday.
Their criticism of the science lobby at the time is that it failed to understand or challenge this. They conclude with the line: ‘Flexibility, variety and competition are needed in studies of science and technology policy, as well as in science itself.’
So, let’s crunch the numbers tomorrow but let us also be wary of painting by numbers in our challenge to government in the coming months and years.
(1) Public Administration Vol 67 Winter 419-433