Home » Posts tagged 'Wellcome Trust'
Tag Archives: Wellcome Trust
Today NHS Blood and Transplant (NHSBT) has called for a radical change in public attitudes and behaviours towards organ donation.
The public have been asked to respond to NHSBT’s new strategy. This asks people to consider some tough questions such as whether registered organ donors should go to the front of the queue for organ donation ahead of non-registered patients? Here’s a piece about it from The Independent. Last week the Welsh Assembly also voted in favour of introducing an opt-out system for organ donation from 2015.
All credit to NHSBT for the boldness of its strategy. Also for the very direct way in which it is explaining what the challenge of on-going shortfalls in organ donation means in terms of lives lost. It should also be applauded for its plain speaking approach to setting out the hard choices to be made if donation rates are to go up.
In the last few years NHSBT and its partners seem to have made considerable headway towards breaking through the glass ceiling of public attitudes on this. It did not always seem that this was a possibility. It only feels a few short years ago that the winning of public support felt like an insurmountable mountain to climb.
I wish the same could be said for how far we have come in the patient data over the last five years. Or at least that was my reaction when I listened to this morning’s news reports about NHSBT’s strategy.
On Tuesday I attended a Wellcome Trust workshop to consider some new research they have commissioned on public attitudes to how personal data is shared and used. It’s an interesting study. It doesn’t seem to be public yet otherwise I would say more about the findings. But it was conducted as part of their excellent ‘Spotlight Policy’ series. Importantly, it looks beyond the health arena at attitudes to use of data in other areas. Much as I found the research interesting, the ensuing debate could have been a carbon copy of discussions – many discussions(!) I have attended over the years on this issue. It certainly depressed me in highlighting the lack of forward momentum in terms of policy and practice. And that’s in spite of things like the NHS Constitution, Caldicott2 etc.
It is not that there is no progress. It is simply that progress has been exceedingly slow. Nonetheless, even glacial change can feel like revolution, so tired and weary does one feel after a while. It caused one of my colleagues at the meeting to say to me that they just wished someone would make a decision, ask direct questions and take a run at them with the public. Like NHSBT.
I have been cogitating on the reasons why we do indeed move forward at a snail’s pace.
Is it that we have too many voices competing for leadership in the debate but no one having overall leadership and responsibility? (It does help the public to know who to shake their fist at after all).
Is the debate in the wrong hands, framed primarily by those who have a self-interest in a certain outcome?
Is it that we lack a strong and independent consumer voice (not our charities I should add) that represents the majority but reflects concern for the minority – a National Consumers Council (NCC) for data (see below)?
Is it that there is no real attempt at engagement with the wider public and political agenda on data use in the way that NHSBT has? [the latter is self-evidently true in my view].
Is it that organisations are weighing up their decisions and actions based on false assumptions and, in essence, fighting ghost?
Is it that…?
…..I am afraid I do not have a hard and fast answer other than ‘all the above’ come into play.
If there is any reason to be optimistic about the future it is because at least the Wellcome Trust work began to ask a range of questions which gets us nearer to understanding the values and principles which people are using to make decisions on how their personal data is used in different contexts.
In my view the debate about patient data in research seems to have been conducted in a sort of suspended animation; in blessed isolation from what is happening more broadly across society and for its citizens. This has caused some of the statements made by scientists seem highly discordant to people when they compare them to their life experience. So, saying it is technically not feasible and indeed scientifically problematical for people to restrict access to certain parts of their data feels very ‘black and white’ and indeed unreasonable to individuals unless the reasons, the pros and cons, are made clear. Even more so when they realise that the debate within research is often about how things need to be done differently.
In this light, maybe we should be forging new alliances and working with people like the nascent Consumer Futures organisation as soon as possible. Their brief is broader from a consumer standpoint and they have already identified the digital landscape and data as priority issues for their work.
New thinking is needed. But, above all, maybe we just need a dose of good leadership, and a transplant of strategic thinking from NHSBT.
It has been in the works for a not inconsiderable amount of time. A slow burner if you like. So it somehow seems fitting that the first flames should flicker almost unnoticed.
Yesterday, Research Fortnight’s Adam Smith wrote about a new mental health research charity to be launched next year with a hefty £20 million kick-start from the Wellcome Trust. It’s working title is ‘Insight: Research for Mental Health.’ But it’s new CEO, Cynthia Joyce, is quoted as saying it is likely to have a different name by the time it hits our high streets.
This is a typically bold strategic move by our largest research charity. Who would have thought that the Wellcome Trust would one day decide to pump-prime a new charity whose business model will depend on traditional public fundraising? I suspect that the Trust will have concluded that this is the best route to making an all-round contribution in the area. For instance, adopting this model is more likely to help raise awareness and de-stigmatise mental health issues than if they had gone the way of a traditional grants programme.
However it is also a strategically important one in terms of the UK’s international standing in mental health research. For it begins to correct two long-term issues in the field: the need for a stronger and more diverse funding stream and; the lack of a major charity funder that is prepared to both support research as well as advocate for funds and encourage other funders to work alongside it .
There is no doubt that these systemic issues have held us back. You only have to look at the figures produced by the Association of Medical Research Charities (AMRC) as part of their latest annual review to see how far mental health lags behind many other conditions in funding from UK research charities despite its human cost and the cost to the nation.
For whatever reason, there has been a collective oversight if not reluctance by mental health charities to pro-actively grasp the research agenda notwithstanding a few valiant efforts to change this. The work of Mental Health Research UK and the Mental Health Foundation are of particular note in this regard. Overall though, it has been difficult to turn a general acceptance of the need to do more into some sort of positive action, as I found when I was at AMRC.
What has happened in the past no longer deserves our attention. It is what happens next that matters.
Above all, those who are doing the work – such as our excellent Mental Health Research Network (MHRN) – will be looking to all funders to think and act collaboratively. Existing charities with their immense knowledge and experience of mental health issues and the needs of their community must act as good hosts. But the new kid on the block must also act the part of the good guest who brings something different to the part but also has much to learn. That includes the urgent need to research quality if life issues as much as take forward biomedical research. At least Cynthia Joyce would seem to be making the right sort of noises in yesterday’s piece.
We shall see.
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.
From The Economist in New York, a short but interesting piece on the growing collaboration between charities, pharmaceutical and biotech companies in the US to bring new drugs to market. More specifically it looks at the ‘venture philanthropy’ model being adopted by charities there to support clinical trials. I’m not quite sure I’d characterise it as the ‘desparate’ lunge that the journal suggests, more an evolution in behaviour engendered by many factors; austerity and costs are just two. It is also a quite deliberate and strategic move to foster innovation on their part.
We are seeing the same pattern emerge here in the UK. In just the past month we have seen our two largest medical research charities both announce ‘venture philanthropy-like’ initiatives – Cancer Research UK and the Wellcome Trust - to boost drug development and fill the ‘translational gap’ as it is often termed. ['Scope' have also announced something similar in the disability area.]
This is on top of what UK medical research charities are already doing to support clinical trials. If you want to understand more about venture philanthropy you might want to look at PhilanthropyUK’s website and this article in particular which talks about some of the areas in which venture philanthropy activity is growing – medical research being one of them.
The brute reality though is that I think this is a strategy really only viable for the larger charities who have the funds to invest. But I would be interested to know whether the criteria they are adopting for investment decisions encompass the possibility of putting money into ideas being generated by other charities who do not have the scale to take them further? I don’t see why not. That could be a potentially important stimulant to greater collaboration between charities. Or perhaps I have just got the wrong end of the stick, although surely it’s about investing in, rather than the provenance of, the idea.
Meanwhile PatientView has published the latest in its surveys of global patient group opinion about industry – this time it’s the turn of medical devices companies to come under the spotlight. In reputational terms, this sector within industry comes ahead of pharmaceuticals and biotechs in how well they are rated generally, but share the same dismal record in terms of ethical marketing.
This ahead of the annual conference of the Association of the British Pharmaceutical Industry (ABPI) in London later this week entitled ‘Can we afford innovation in medicine?’
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!
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 a thing or two about how practices and approaches to science reporting are changing. Note the reference in it to The Guardian for instance.
Of course, today we have a real-live case study in the media with the news of the Human Fertilisation and Embryo Authority’s (HFEA) public consultation on the acceptability of new techniques to treat mitochondiral disease and the associated Wellcome Trust £4.4 million grant to Newcastle University to build a new centre to lead research in this area.
My sense is that media reporting of this sort of ‘high-politics’ event in science seems to have improved and is continuing to improve.
The more difficult issue is the daily churn of lower-lying misinformation in the media about science or more specifically health research and associated health claims on which people may act. That seems a somewhat harder nut to crack. Some of the proposals made by AMRC et al would help. But there are wider issues around training etc that could also have a positive impact.
Anyway, I am pleased that they’ve done this and brought this to the attention of an inquiry whose recommendations will have a long-lasting impact on the culture and practices of the press.
Who would come top in your league table of public engagement in science? And who would you relegate?
They say in football that the league table never lies.
Fans and players may begrudge a decision or two, or feel that luck did not go their way in a match. But even the most ardent supporter will accept their team’s league position after than final game as a true reflection of how good they were over the season.
Every year a range of ‘league tables‘ or ‘world rankings’ of universities are published. It always surprises me how much news they generate even though the standings don’t seem to alter that much. How much more fun they would be were there a relegation zone? Or points deducted?
Research activity plays a significant role in determining the respective rankings of universities in many of these lists. Depending on the list this activity is defined by research income, outputs or the staff profile. None, as far as I am aware, look at public engagement.
In fact, why couldn’t a ranking be produced of all UK science organisations based on their public engagement in science activities?
It might be based on a range of factors – their annual investment in such work; this investment expressed as a proportion of their overall expenditure; how this has changed over time; their reach in terms of audience; their impact as regards changing behaviour or generating knowledge and; whether they have an embedded programme and/or a strategic commitment to it at the highest level.
All of these factors raise complex issues – simply reaching an agreed definition for each of them is fraught with difficulty. And, as the variation in the quality of ‘impact’ evidence provided by institutions in the recent REF pilot exercie demonstrates, some of them are not even on the same planet as us when it comes to what they think is public engagement.
But at least a league table or scorecard might help generate greater transparency about what science organisations are up to and whether it represents good value for money, indeed whether they are any good at it or as good as they claim to be. And they might help us assess how they stack up against one another in terms of the effectiveness of their public engagement work.
A quick scan over various annual report and accounts of the major funders over the weekend was revealing in the lack of depth one can reach too.
The Wellcome Trust stands head and shoulders above the rest perhaps because it has lived with public benefit reporting under charity law for some time. The big four universities are obscure to say the least despite some nice stories here and there. Even those universities with public engagement beacons shine a little dimmer than they should.
And then there’s the Royal Society which continues to frustrate in its inablity to give a sense of the whole as opposed to its individual parts. Until it says otherwise one could be forgiven for thinking its much-lauded 350th anniversary – well, by Melvyn Bragg anyway – was little more than a fundraising exercise to create the science equivalent of Downton Abbey (otherwise known as Chihcely Hall). But I suppose it does do a very good summer exhibition so that’s ok.
In fact it strikes you when you look at the individual efforts of these institutions how, while they have every right and cause to invest in their own programmes, there could be some benefit and greater impact achieved by a pooling of some of this effort in monetary if not effort terms. It all seems so…well, er, fragmented at times.
Time to get off my hobby horse. But I do think that there is merit in an exercise aimed at producing a league table on public engagement by science organisations on an annual basis.
Simplistic, rudimentary, yes. But would it be lying at the end of the day? I very much doubt it.
So the Commons Science and Technology Select Committee has this morning published its latest report about the building of the UK Centre for Medical Research and Innovation (UKCMRI) in London. THES has a report here.
The Committee seems rather oddly to have raked over old coals in its questioning of whether London is the most appropriate place and asks that UKCMRI make every effort to work with colleagues across the UK so that opportunities are not lost. I say ‘oddly’ because I always thought this was in UKCMRI’s job specification anyway.
It also asks for a reconsideration of the issue of social housing near the site.
I didn’t know this but I understand that the building is going to be named after Francis Crick, co-discoverer of the structure of DNA,
I was unable to get to the Wellcome Trust Image Awards last night so as recompense I am posting the link to the online gallery of winning photos. The picture of the kidney transplant by David Bishop from UCL Medical School is my favourite and got a special award.
This also gives me an opportunity to mention Kidney Research UK’s 50th Anniversary and their online survey to better understand public awareness and perceptions of kidney disease. Please do take a few minutes to do the survey.
Probably not, I know, particularly if you are Andrew Lansley I suspect. But this is good drama and good for your health. I am delighted that AMRC is going to be part of the following, exciting initiative in public engagement. Read on for the news release (apologies, I know that is a bit lazy of me) but you can find more details on Y-Touring’s work here.
Theatre pioneer’s £1m to spark national debate on advances in biomedical research – Tuesday 18 January 2011
Y Touring, an award-winning national touring theatre company, has been awarded almost £1m by the Wellcome Trust to support a five-year theatrical project on biomedical research and its implications for human health.
The Strategic Award will be used by Y Touring, now celebrating its 21st year, to develop and produce one new Theatre of Debate® project annually for five years. Each project will explore and stimulate conversation on a different facet of biomedical research and its effects on individuals and society, through the use of theatre, debate and digital media. Y Touring Theatre Company is an operation of Central YMCA, the UK’s leading activity for health charity.
Original theatrical productions will be toured in schools around the UK and be streamed live to cinemas throughout the country. The project will create a national network of schools with access to extensive educational resources; facilitate a community of students engaged in part through digital media; and encourage debate about the impact of biomedical research on society among young people and adult audiences.
Nigel Townsend, Executive Director of Y Touring, said ‘We are thrilled to have received this Strategic Award from the Wellcome Trust and look forward to undertaking this exciting project. The fast pace of scientific advances is having an increasing impact on human health. This project gives us a chance to bring together scientists, young people, artists and teachers to explore these vital issues.’
The project, costing £1.6 million in total, will start in April 2011. The first year of work will focus on pharmacogenetics, the science of ‘tailoring’ medicines to best fit with individuals’ genetic make-up’. This will be conducted in partnership with Valerie McKelvey-Martin, Head of Engagement, at the School of Biomedical Sciences, University of Ulster.
The project will cement Y Touring’s relationships with its co-applicants: Each play will be performed every day for a week during National Science and Engineering Week in the Royal Albert Hall’s Elgar Room and the five year project will be led by a Steering Committee chaired by the project’s scientific consultant, Sophie Petit-Zeman, Head of External Relations at the Association of Medical Research Charities (AMRC). The project is to be independently evaluated by People Science & Policy Ltd.
“For Y Touring to have been successful in winning ‘strategic’ funding of £1m over the next five years from the Wellcome Trust is testament to the strength and success of our long-standing partnership,” says Rosi Prescott, CEO, Central YMCA. “We’re looking forward with great enthusiasm to this next important phase in the development of our relationship with Wellcome and I am confident we will make ground-breaking and ambitious strides, working together to bring science to life for young people and their communities.”
Sophie Petit-Zeman, Head of External Relations at the AMRC, commented:
“Y Touring has an incredible talent for turning really tough medical subjects into gripping and accessible theatre and debate. Having worked with them on plays about mental illness, animal research, stem cell and embryo research and clinical trials, it is really exciting to be starting a five year project which will allow us to tackle still more topics that matter to the medical research sector. For our member charities, this is proving to be a fantastic way to explain the work they do and explore the debates that surround it with their public supporters and patient beneficiaries, young and old alike.”
Clare Matterson, Director of Medical Humanities and Engagement at the Wellcome Trust, said: “We hope that this Strategic Award will enable Y Touring to build on its excellent track-record of promoting public understanding of and engagement with science through drama. Over the past 21 years, the company has shown consistently the unique role that drama can play in enabling audiences to reflect on both the science and its ethical and societal implications too by portraying authentic situations within which are embedded essential ethical and moral issues for debate.”
“I am delighted that Y Touring has received this award from the Wellcome Trust. The Royal Albert Hall has worked with Y Touring over the last three years as part of its charitable remit to support both the arts & sciences. Our relationship with the Company has grown each year, and we are very pleased that we will now be able to plan a longer-term involvement,” said Alastair Tallon, Head of Learning & Participation at the Royal Albert Hall.
Joan Bakewell, Y Touring’s patron, commented:
“I am thrilled that the brilliant work done by Y Touring has gained the sustained support of the Wellcome Trust. In the present climate this is especially pleasing and a tribute to the high standards of both organisations.”
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.
A brief but important mention of the letter in today’s Times signed by over 100 cancer scientists and doctors. The letter cites Breast Cancer Campaign (an AMRC member) and highlights the importance of the Government-backed Charity Research Support Fund (CRSF) to the funding of research in universities by medical research charities.
If you want a succinct but well-articulated case for CRSF then you need look no further than this letter. And it’s significant in my opinion that the argument is being made directly by scientists themselves rather than charities. This is not special pleading. The fact is that the Fund is an important foundation for the partnership between Government, universities and charities in the name of research, and a vital mechanism for helping to leverage research funds from our sector.
You may also wish to look at the joint statement on CRSF that AMRC produced with BHF, Breast Cancer Campaign, Cancer Research UK, the Wellcome Trust, Universities UK and the Russell Group in July this year. The statement was submitted with our spending review submission.
All our discussions with Government thus far suggest the arguments for the Fund have been accepted just as those on ‘science = economic growth’ were taken on board by HM Treasury with its spending review announcement. But how this translates into actual money won’t be known for possibly a few weeks yet. So letters like today’s can play a useful role in keeping the issues to the fore.