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It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not for him.
No more so than Sarah Boseley’s article in The Guardian on Friday . She deals with the way in which Nelson Mandela changed the HIV/AIDS agenda. Her piece focuses on Nelson Mandela’s speech at the international Aids conference in Durban in 2000 – arguably a key turning point in the fight against the disease. His words refocused the minds of warring scientists, activists and politicians, on tackling what mattered most: the human tragedy being played out on the African continent.
Sarah Boseley inspired me to dig out the text of his speech and here it is. I hope you will find just five minutes today to read it. Even on the page it is a beautiful piece of oratory. You can hear Nelson Mandela’s voice so clearly.
Two extracts struck me as particularly relevant to the discussions at the G8 Dementia Summit in London tomorrow:
“Now, however, the ordinary people of the continent and the world – and particularly the poor who on our continent will again carry a disproportionate burden of this scourge – would, if anybody cared to ask their opinion, wish that the dispute about the primacy of politics or science be put on the backburner and that we proceed to address the needs and concerns of those suffering and dying. And this can only be done in partnership.
I come from a long tradition of collective leadership, consultative decision-making and joint action towards the common good. We have to overcome much that many thought insurmountable through an adherence to those practices. In the face of the grave threat posed by HIV/AIDS, we have to rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so now, and right now.”
“The challenge is to move from rhetoric to action, and action at an unprecedented intensity and scale. There is a need for us to focus on what we know works.
We need to break the silence, banish stigma and discrimination, and ensure total inclusiveness within the struggle against AIDS; those who are infected with this terrible disease do not want stigma, they want love.”
I am not making a comparison between HIV/AIDS and dementia. But Nelson Mandela’s words embrace eternal themes that are well worth remembering on the eve of tomorrow’s summit.
The G8 Dementia Summit programme was published yesterday and can be found here. The website will also have coverage of the meeting all day tomorrow I believe.
My good friend, colleague, former carer to her mum, Peggy, and campaigner, Susie Hewer, has a piece on the dementia summit website about her own experiences with dementia and what the summit means for her here.
My previous blog on the G8 Dementia Summit can be found here.
BBC coverage of Nelson Mandela’s memorial service taking place in Soweto today is here.
GSK’s Witty remarks are easy to swallow from a patient perspective but the rest of the flock must follow
I spoke at the Clinical Discovery 2012 conference yesterday about the future value and impact of clinical research. This is one of a number of similar events I’ve presented at over the last month or so. On reflection there generally seems a more ‘upbeat’ conversation among conference-goers about clinical research in the UK compared to this time last year. In fact I’ve heard a number of people speak from the floor about how we are rising up the international league tables again in terms of delivering clinical trials. It will be interesting to see any emerging data to support these case reports.
One of the slides I put up yesterday showed this reported quote from Sir Andrew Witty’s speech (CEO, GlaxoSmithKline (GSK)) at the Wellcome Trust from last week.
“There isn’t a day goes by that me and the rest of the company aren’t grateful for what patients offer to do in a clinical trial. They offer willingly to go through a process of experimentation. That’s an extraordinary gift from individual men and women. At one very human level actually we should be finding ways to make that commitment as useful as it can possibly be for society.“
This is the speech in which Witty made his announcement that GSK would be opening up its clinical trial data and pulling together an independent board composed of, among others, patients, to consider requests from researchers who wish to access it. An undoubtedly welcome move. But, as the old saying goes, ‘one swallow doesn’t make a summer.’ Patients – or at least the ones I talk too – are increasingly concerned about this stuff and the rest of industry needs to be encouraged to follow suit. As more patients become involved in research they will rightly have searching questions that can only be properly answered with greater transparency.
Anyway, I suppose the point I was trying to make in my slide was that, in any discussion about the value and impact of clinical research, it is imperative that we define it from a patient perspective – in terms of patient outcomes, improvements in quality of care but also their experience of taking part in research. Not just the wealth of the nation. And – as Sir Andrew says in his quote – that also means, at a very human level, acknowledging the value of people’s contribution.
I went on to say that one of the perennial complaints of people who have taken part in research – and a symbolic one in terms of their status within the system – is not being thanked for taking part in research and, more importantly, receiving no feedback whatsoever about what the research found and what question it helped to answer. I guess someone will tell me – as others have on a number of occasions – that we can’t do this because of commercial confidentiality etc etc. But I suspect they will crumble in the same way that many of the arguments against greater openness and transparency in industry trial data are crumbling. Sooner rather than later I hope.
Just in case you had missed it, it’s all about patient experience from now on! And a good thing too.
Or, at the very least, it seems the intention is to ask people more questions about their experience. A lot more questions in fact.
In the new world, I wonder, will we be met by NHS ‘chuggers’ as we walk through the doors of our local hospital for an appointment? Will there be follow-up calls? What happens if we refuse? Do we have the right to remain silent? Do we get the right to one telephone call before questioning? A friend perhaps? I need to know. I’m not good under good doctor, bad doctor questioning. Although I do respond well to plea bargaining about diet etc.
So, you might want to get your question in to the expert questioners first, by taking part in The Guardian’s live Q&A at lunchtime this Friday 15th June about patient experience and feedback. I tend to agree with Dick Vinegar’s take in The Guardian last month that patient feedback is ‘a blunt instrument that needs sharpening.’
Returning to the broader point about patient experience, recent ponderings on the subject led me today to the Cleveland Plain Dealer in Ohio, USA. Cleveland is a very rainy city if I recall from my brief trip there years ago. But this highly readable article felt like the sun coming out. Entitled ‘Art of patient satisfaction meets the science of medicine’ it shines a light on what putting patient experience at the heart of a health organisation’s culture really means in practice.
The organisation concerned is the Cleveland Clinic and its turnaround story has also been featured recently in the Harvard Business Review – you can read it here for $6.95! In sum, questions are a good starting point..but it’s what you do with the answers that really matters. Obvious point but patient experience does suggest it needs repeating time and time again.
Here’s some more on the Cleveland Clinic’s approach to patient experience. And this article - looking at the drive to appoint Chief Patient Experience Officers (CPEO) in New York hospitals in the same way that the Cleveland Clinic did – just shows how quickly these things become an industry in their own right. Is that good or bad? Bad if the industry loses sight of its mission.
Nonetheless I quite like the idea of being questioned by the CPEO next time I’m in Cleveland. Sort of feel they should be accompanied by R2D2 don’t you?
Good Guardian blog yesterday giving a lay summary of the ‘open access’ debate vis a vis papers published in scientific journals. There’s also been a healthy exchange of letters in The Times this week but ironically that’s behind their paywall. However, at least The Times is available in all good newsagents at a reasonable price.
Unsurprisingly, I totally get and support the arguments in favour of open access. But inveterate blogger and public engagement in science expert, Alice Bell (blog home page here), twittered this morning that open access is more than just about publishing papers. Hear, hear!
I believe the arguments being made by research funders and others, that ‘open access’ has societal benefits, are sincerely held. But, at the same time, the debate does sometimes come across like a power struggle between the mighty and the mighty.
How good, indeed seismic would it be, were funders to use the same public interest arguments to ensure that the people they fund got their act together, not just about where they disseminate their research but how they disseminate it.
Public understanding of science will be marginally improved by better access to articles. Yet, it could be radically improved if we also saw a commitment to the writing of a good lay summary of their work and to see this appear with every published article. For some reason, funders have seemed reluctant to pay serious attention to this as an important tool to understanding science, its dissemination and impact. But it’s clearly in the public interest.
See the PatientsParticipate project for more.
Got to dash!
So there I was this morning talking about peer review, when what should come through the Ovarian Cancer Action letterbox but our certificate of best practice from the Association of Medical Research Charities (AMRC) for our peer reivew practices.
It’s great to have this ‘quality-mark’ for all that we do as a research funder. If you want to read more about AMRC’s peer review audit process have a look here.
By the way I forgot to mention this article from The Guardian that covers the RAND Europe reports. AND you can vote on whether the peer review system should be changed or not.
I know some of you like to finish the week on a clinical trial so here’s a good local newspaper piece from East Lancashire about the trust there beating its targets for clinical trials. It’s also a good story about the role of the NIHR clinical research networks in helping to make it happen.
Well, we won’t have too long to wait to know whether this is true but the Guardian is reporting this evening that science spending is to be frozen in tomorrow’s CSR for a review period, representing a 10% reduction in real terms over that time as inflation reduces the spending power of departments.
…and further perspective from the Financial Times running along the same lines as well as more on BBC News including some more specific remarks about the Medical Research Council. Plus The Times (paywall). Interesting narrative in the latter piece from Treasury sources which suggest the growth arguments of the science lobby have been effective.
Language is everything in politics. We hang of every word of our politicians for any hint of a change in tone or content that might indicate whether a batlle is lost or won. The same is true of those campaigning for change. Just read my blogs from all three party conferences.
It feels in this eleventh hour before the Comprehensive Spending Review (CSR) that the language is hardening on both sides, that the courting is over and that hard truths are being spoken. I was pleased, for instance, to see such a stout defence of the charity position by the Wellcome Trust (our largest member) in today’s Guardian which reflects the position we articulated in our letter to The Times some weeks ago.
I think that I speak for my member charities when I say that there is a perennial frustration over the sense that the government talks about the contribution of medical research charities as a ‘nice to have’ bonus rather than recognising the essential and integral part it plays in making science happen in the UK. It used to talk about the charity sector’s delivery of care services in the same way until it realised it couldn’t deliver a welfare state without.
Similarly, in research, the UK would be ‘poorer’ without the contribution of charities in every sense of that word.
You only have to look at the latest figures on health research spend in the US which have been put out by the influential lobby group, Research!America to see what I mean. Now, few can compete with the sheer scale of funding in the States but I decided to do some number crunching myself (always a dangerous thing I know) to compare the contribution of the charity sector in the US to that in the UK.
Research spending is spliced differently there but if you add up what seem the most comparable aspects of ‘government’ funding in terms of NIH, state government funding etc and then add up the contributions of the voluntary health associations, philanthropic associations and independent institutes you get a total spend equivalent to £42.7 billion.
Its a rought cut I know. But if you now articulate the ‘charity’ contribution in the US as a proportion of all public expenditure there you get a figure of just under 8%. Even then, I think that is slightly inflated because of the nature of some of the organisations classed as NGOs.
What’s the proportion of public expenditure contributed by charities in the UK? Approximately one third.
But as Mark Walport so rightly put it in The Guardian this morning, it is less about the money than the synergy between the charity sector here with its other partners, the fact the sector is pushing in the same direction rather than entertaining private concerns as some of the American NGOs are wont to do.
If our government really does believe charities are a potential substitute for their forthcoming plans then they have seriously misunderstood the nature of the sector in the UK. Indeed, it is the sort of thinking upon which best laid plans will quickly unravel. I am even tempted to say something about ‘gift horses’ but is the end of a long week and that may be a little over the top.
What do you think?
They say that if you want to see your hometown or nation in a different light you should walk with a stranger who is seeing and experiencing it for the first time.
I probably learnt more about England during my spells living abroad than I have in the years before or since. So I was interested in a piece in today’s Washington Post about the wind of austerity passing through science across Europe. It contains only two or so paragraphs on the UK but as a snapshot they tell you almost everything you need to know at this point and more than most of the lengthier comment pieces you will find. To read their correspondent’s take that the UK is ahead of the pack in planning to make deep cuts, makes that wind seem unseasonably cold and bitter to the touch.
With the Business Secretary, Vince Cable, due to make his first speech on science tomorrow I suspect we are likely to see a number of articles appear tonight and tomorrow morning trailing his speech and/or putting the case for science. William Cullerne Bown looks ahead to Cable’s speech in his Guardian blog this afternoon and paints a very gloomy picture of what it could mean for science.
I agree with William that tomorrow, at the very best, we might get some coded indication of how harsh the wind will be. But, from a charity perspective, the other determinant of whether apprehension begins to turn to outright alarm is the degree to which Vince Cable uses his speech to start setting out the Coalition Government’s long-term plans for science. Willetts’ speech at the Royal Institution in the summer wasn’t it – he was throwing out some ideas. But this is the occasion I would have thought to begin to instil what we might term some business confidence. Otherwise the sense of living hand-to-mouth will become embedded. And in that environment the Government will find it much harder to achieve what goals it does have.
We shall know soon enough I suspect.
And finally….since I served on the working party it seems only right to mention the Research Integrity Futures Working Party report out today which calls for the establishment of a one-stop shop for researchers, institutions and others to get advice on research integrity to rebuild public confidence undermined by a series of scandals. See also the Nature blog piece.
You may be interested in this call to arms by Evan Harris on The Guardian blog today. His essential point is that scientists and their supporters need to focus their attention on HM Treasury from this point onwards. Geoff Brumfiel makes a similar call in his article today also in The Guardian.
That is certainly our sense at AMRC as well. At this stage in the Comprehensive Spending Review (CSR) the locus of decision-making shifts to Osborne and colleagues. Between now and then we will also, of course, have the party conference season and we shouldn’t underestimate its importance this year in getting the message across.
Some of you may have also seen the following piece in the Time Higher this week which talks about scientists’ fears that the Government is banking on charities to fill the gaps resulting from science cuts. It is a recurrent fallacy in Whitehall thinking that the third sector is a safety net with an endless capacity to catch the fallout from its decisions. How wrong they are. We should not and can not substitute for Government funding.
While we are the first to shout about our success we are also acutely aware that it is only possible because we are part of a much wider, enterprising collaboration. In the run-up to the Cooksey review many moons ago, I remember being told that medical research funding in the UK is like four legs of a chair, each one representing a different stream – charities, private, Medical Research Council, NIHR. When in balance, the chair is stable. Begin to saw a little of any leg, and the chair falls over. I might send the Treasury one with a note so they get the idea.
Last night I was contemplating how to make the remaining half of my net-worth last for the rest of the month, when thoughts inevitably turned to the announcement by 30 US billionaires last week that they intend to give at least half their wealth to charitable causes.
The charge of the billionaires is being led by Bill Gates – already well-known for his global funding of research into malaria, HIV/AIDS etc and Warren Buffet. For those of you not familiar with the latter, Warren Buffet is the man whose sage words on the economy and investments are fed upon by millions of Americans whose stock-portfolios are their source of wealth in old-age. This in a country where the array of local radio phone-ins and consumer slots on personal finance make BBC Radio 4’s ‘Money Programme look like small change.
Despite the understandable headlines since, heralding the ‘new philanthropy,’ history is of course littered with the names of the wealthy inspired to give to good causes: Rockefeller, Henry Ford, Paul Getty, Sir Henry Wellcome, Lord Wolfson, Lord Sainsbury. The only difference now is perhaps the scale of wealth involved and the opportunity for – indeed, desire of – such figures to make a significant difference on a global stage.
Private philanthropy has historically been a mostly US phenomenon for all sorts of tax and cultural reasons. The Guardian article linked-to above quotes the Charities Aid Foundation (CAF) in the UK as saying that the top 100 philanthropists in this country gave £3.5 billion to good causes and that private philanthropists here tend to fight shy of publicly declaring their gifts to good causes. Out of this sum I would estimate that tens rather than hundreds of millions of pounds have found their way to medical research although it is difficult to trace exact sums.
So, the promissory note of an unprecedented cash injection to medical research at a time of world economic crisis and massive cuts in public expenditure would seem like manna from heaven. But the move has inevitably sparked a debate in the media and elsewhere about the pros and cons. Ian Wylie’s piece in the FT today is worth looking at.
In my own instance it has led to a self-admission that I know less about how these future philanthropists and their operations work than I perhaps should. So I offer up the questions I will be seeking answers to, rather than proffer a rounded critique.
- Will money and activity on this scale have a distorting effect on what is funded and what is not? How best might it be used?
- Is there a willingness to use such donations to leverage Government and other investment (it would seem so, according to the FT piece)?
- Given the nature of entrepeneurs will they see collaboration and partnership with others as a help or hindrance?
- How transparent will they be, and what systems will they have in place to ensure that they are funding science of the highest quality?
In the UK medical research charities have worked hard to ensure public trust and confidence in what they do and how they do it, by allocating money using peer review and often involving patients and the public in the scrutiny of such decisions. This approach is not embedded in either the culture of other countries nor in the world of private philanthropy. Yet.
So, rather than let ourselves be readily seduced by new-found riches or indeed kick it into touch, we all need to know a lot more about the ‘Giving Pledge’ and how its supporters intend to work and learn with us in the future.
Here are a few loose ends from this week if not before.
First, I’m delighted that the Journal of Ambulatory Care Management have published our paper about AMRC’s ‘Natural Ground’ project on patient public involvement in their July issue. But I am afraid it looks as though you have to pay to download it. Nonetheless, it would be remiss of me to mention it.
The full text of Andrew Lansley’s last in his trilogy of speeches over the last few weeks – this one to the BMA – can now be found on the Department of Health website.
As a follow-up to my post yesterday before the formation of the Conservative/Lib Dem Coalition Government, you might want to look at this article by Geoff Brumfiel at naturenews which looks at the coalition agreement published today and speculates what it might mean for science.
Interestingly I noticed on the Downing Street website this evening that other invitees to Cabinet meetings (i.e. not a full member of Cabinet) will include David Willets who is described as Minister of State (Universities and Science), Department for Business, Innovation and Skills.
If you want to see the full text of the agreement you can find it on The Guardian website. I believe a longer more detailed document will be published by the Government shortly.
Today I hotfooted it (literally in the 30c+ heat!) to the World Conference for Science Journalists (WCSJ) taking place at Central Hall in London. I was taking part in a debate on the question: ‘Is the growing influence of PR on science journalism in the public interest?’
The other speakers included Ben Goldacre from the Guardian, Andrew Jack from the FT and John Clare from Lions Den Communications – a PR company. It was a good debate raising some interesting issues for not just my members but all medical research and health charities. On the way back a few questions struck me:
Do charities train and support their press team well enough to handle science stories, filter the spurious from the evidence-based, and fight their corner with colleagues who are anxious to raise the profile over and above anything else?
As charities increasingly become direct-to-patient providers of information and comment on science and health stories are they doing enough to also quality control what they and their colleagues are saying? And should they be more proactive in dishing the bad stuff rather than trotting out the perennial ‘more research is needed.’
How close is ‘too close’ when charities work with industry? What should charities be expected to report in terms of links, funding and public benefit derived from it?
As it says on the exam paper: Discuss?
Today I took the line that the PR industry and its people (which includes those doing PR for charities) are too easy a target for those who criticise what is in fact a system-wide problem in how we feed the beast that is today’s mass communications industry.
But, above all, that patients are actually better at discerning the rubbish from the sensible if given the right tools and the opportunity to engage with health professionals. A media story about a new treatment is often their starting point not their end point.
That good science – and the organisations that stand for it – do not put nearly enough money into communications and PR and are ten years behind the PR industry in their thinking about public engagement with the modern consumer?
That charities should work with industry. It is no bad thing. But the relationship needs to be open and transparent and we all have a duty to police and get rid of ‘Trojan Horse’ patient lobbies which are in fact industry mouthpieces.
As I say, discuss? It is an interesting topic and the debate will likely run and run.
In the meantime, watch out on our website for details of our workshop next year for press officers working for medical research charities entitled: Communications: is it a science or an art?
And if you can’t wait that long, a reminder of AMRC’s guidelines on working with industry ‘An Essential Partnership.’
I was quite pleased with the media coverage that we got yesterday for our press briefing on the effects of the economic downturn on medical research charities.
I felt that we had got the difficult news out but had also managed to convey some positive messages about what our members are doing and what the public and policy-makers can do to support them at this time.
I was struck by The Guardian’s piece in particular though – if only because it had gone to the trouble to ask around some charity sector watchers for their view.
I agree with Professor John Mohan from the Third Sector Research Centre that charities should be careful not to ‘cry wolf’ and hope that no one felt that this was the case yesterday. But the bare fact is that some charities are facing an extremely challenging time at the moment.
I also wonder whether the evidence on how charitable giving has held up during previous recessions is only informative up to a point. After all, isn’t this economic downturn different in its causes? Is it not also unique in terms of its speed of onset, depth and scale? Finally, is not the level of exposure of charities so much greater now than it ever was? But I’ll certainly check out John’s book on The Great Depression.
The fact is that I would like nothing more than for John Mohan and others to be proved right and for us to be proved wrong. And finally, while I am not levelling this accusation at yesterday’s commentators, I do feel that there is an air of complacency about the eventual impact of the recession not just on our pockets but also on the way future Government’s will think about public finance in general.
So we’ll continue to press the case responsibly that, while our members are committed to doing all the right things just now to weather the storm, the support of donors, Government and others is going to be crucial if they are to emerge strongly on the other side.
I leave the final word to CORE - one of our members who has the following on their website:
‘Our income is being seriously affected by the downturn in the economy. We need your help to continue funding research to find cures and new treatments for digestive illnesses. Every donation counts. We receive no money from government or the NHS. We must raise another £100,000 to maintain our research programme.’