Government pushes forward with review to speed up availability of innovative medicines and treatments

Two posts in one day!  Ah, those were the days when we got two Post Office deliveries a day….

Just to say the Government has published the full terms of reference for its Innovative Medicines and MedTech Review to be headed up by Sir Hugh Taylor who is currently Chair of Guy’s and St Thomas’s.  Yes, that’s the very same review I said this morning would be out any time soon.  Only it happened yesterday!

The remit is comprehensive and the door is very much open to patients and patient groups to give their views.  The specific para of relevance here is as follows:

‘Consider how to ensure patient trust in the regulation and assessment of medicines and medical technology, and recognise the importance of the patient voice and role of medical research charities as both sponsors and beneficiaries of innovation.’

The review is being supported by the Wellcome Trust – in other words they are doing the legwork – and there is a short blog on their website here.  They haven’t announced the other members of the review panel nor details of how it will work. We will learn more in due course.

I think Hugh Pym at the BBC has written a good piece here on the significance of the review for the future of medical research and speedier access to medicines for patients.

Also this from law firm Pinsent Masons which highlights the review focus on digital technologies.


Spend £1 on cancer research and get 40p back every year: what’s not to like?

Today the All-Party Parliamentary Group for Medical Research holds its summer reception in parliament. This annual event has become an important fixture on the health research calendar. The ‘great and the good’ assemble to focus on a key issue of the day and to network. At some point in proceedings they will be addressed by the Science Minister, David Willetts MP, or Health Minister, Earl Howe, or both.

This year’s event is headlined ‘healthy futures’ and aims to bring to light how investment in research has long-term economic and social benefits. This is all with an eye on the forthcoming General Election next May and a subsequent Comprehensive Spending Review (CSR).

In recent years, research funders have sought to understand better the impacts arising from the money they spend on research. Often this impact has been expressed qualitatively. But is has proved more difficult to place a financial value on impact. The first report to do so was published in 2008 when I was the Chief Executive of the Association of Medical Research Charities (AMRC).

The report looked at the economic returns arising from government and charity funding of cardiovascular research, also testing the methodology to a more limited extent on mental health research. The study, undertaken by the Health Economics Research Group at Brunel University, RAND Europe, and the Office of Health Economics, found that for every £1 invested by the government and charities in cardiovascular research, a total annual return of 39p was generated each year in perpetuity. The figure for mental health research was 37p per £.

Now the study – commissioned by Cancer Research UK, Wellcome Trust, the Academy of Medical Sciences and the Department of Health – has been repeated in cancer and published as a paper in BMC Medicine to coincide with the All-Party Parliamentary Group on Medical Research reception. You can read the paper here:

The key findings in the study which are also published in report form as ‘Medical research: what it’s worth,’ are as follows:

The British public has funded £15b of cancer research over the 40 years to 2009 through taxes and charitable donations.

The time lag between investment in cancer research and it’s eventual impact to patients is around 15 years. This is similar to the figure obtained in the earlier study, and shows the long term nature of the payback from research funding.

Key cancer treatments and interventions have delivered the equivalent of £124b og health gains for UK patients in the 20 years up to the end of 2010.

The proportion of these benefits attributable to UK research was 17%.

Taking the spend, and allowing for the time lag and the proportion of benefits attributable to UK research, each £ invested in
cancer-related research by the UK taxpayer and charities generates returns of around 40p in every following year. Of this, 30p is the estimated benefit from research to the wider economy; the direct health benefits amount to 10p per annum for every £ spent. The overall annual rate of return is estimated to be 40%.

I am sure the study will be challenged by some and so it should.,Only through ever-greater scrutiny are we going to improve these
socio-economic models about research. But they seem of enormous value to me in trying to quantify the impact of money spent today, on society tomorrow. And if it makes policy-makers and newly-minted Ministers put their red pen away then all power to its elbow.

A brief update on NIHR’s review of public involvement in research

We have just passed the mid-way point in the ‘evidence-gathering’ phase of NIHR’s strategic review of public involvement entitled ‘Breaking Boundaries.’  So here’s an unofficial Chair’s view.

The announcement of the review on 31st March, its terms of reference and our initial call for views can be found on NIHR’s website here

People can at the moment choose to respond to the review using the downloadable questionnaire on the website, or using the online survey which is available here.  So far, almost 200 people have responded to the online survey.  61% have said they are a service user/patient/consumer/carer.

In addition there is now a facilitator guide as well as some PPT slides available for people who are planning to hold a group discussion with patients, carers and colleagues before responding.  Our sense is that quite a few organisations are planning to do this as part of their response.  Anyway, the guide and the slides can be found at the end of this post.

Also over the last month we have held discussion sessions at four meetings where the excellent RAPPORT study of public involvement was reported. These events took place in Manchester, Bristol, London and Cambridge and reached about 200 people, again mostly patients, carers and members of the public.  Thinking about these sessions and the sorts of comments we are getting through the written and online survey evidence, some key issues and questions.  Thematically, these might be headlines:

  • The purpose and value of public involvement
  • The infrastructure needed, national, regionally and locally, to deliver public involvement
  • The resources necessary to deliver public involvement that works
  • The importance of relationships to the success of public involvement
  • The learning (knowledge, skills, experience) needs of all partners and how to support them
  • The need to tackle the impact and outcomes agenda

We have also held two ‘international’ sessions by phone with colleagues from Canada, USA, Denmark, Australia and the European Union.  It was clear from these conversations that the UK is held in very high regard for what it has achieved in public involvement; we are the recognised leader in many respects. Also, that this leadership is closely associated with the work of INVOLVE over the years.  Nonetheless, we have much to learn from them.  We are all battling with the need to prioritise and find models suited to the future not the past or present.  The case for an international alliance or association where we can share our ideas and challenges is growing in strength.

This week we will be meeting with representatives and members of the Association of Medical Research Charities (AMRC) and Association of the British Pharmaceutical Industry (ABPI) to get their views on public involvement in research.  Heading into June there will be a range of events where we will be holding ‘consultation’ sessions including North West People in Research Forum on 30 June and the Health Services Research Network (HSRN) conference on 19/20 June.  And, finally, some yet-to-be scheduled tweet chats and social media activity.  Please remember that the hashtag is #PPIBreakingboundaries

Please keep the responses coming in.  I know I speak on behalf of all the review panel when I say they are insightful, helpful and hugely important in their own right.

The  previously mentioned guide can be found here: 

  And the slides can be found here:

The medical marathon; a piece to mark the #LondonMarathon2014

What is, I wonder, the equivalent of Noel Coward’s lyric ‘only mad dogs and Englishmen go out in the midday sun,’ which might encapsulate the phenomenon that is the Virgin Money London Marathon?

This morning tens of thousands of runners will set out from Greenwich Park as they do every year with high hopes of finishing two, three, four or more hours later at Buckingham Palace.  It will be the 34th London Marathon.

People from all ‘runs of life’ including patients, carers, doctors, nurses researchers, scientists and charity fun-runners will have trained long and hard these past few months so that they can take to the Capital’s streets and know that, with every pounding foot, money is being raised for their favourite cause. And medical research dominates those causes.

It is difficult to say precisely how much of the £660 Million raised for charity since the London Marathon started in 1984 has gone to medical research.  But my reckoning is that, out of 54 charities who have been honoured to be the official London charity of the year since then, 20 have been medical research charities.  The British Heart Foundation leads the pack having been chosen four times, the Anthony Nolan Trust is not far behind.  Including this year, it has been the official London Marathon charity on three occasions.  There’s a page dedicated to the history of the London Marathon and its links to charities which is worth a look if you are interested.

The first of these medical research charities was the Middlesex Hospital Research Fund in 1986, the hospital being notable for being a significant cancer research centre then and now I believe. Also, for being where I was born!

There are many, many more charities who simply enter runners into the event of course.  I calculated that, of the 91 who I assume pay for the honour of being included on the main listing provided by Virgin Money, 38 are known for their work in supporting medical research.  Yet this only skims the surface.  Trawl further through the A-Z listing and many household names pop up who also do much to fund medical research.  And who knows how many local research charities barely merit a mention beyond their local newspaper if that.

And what of the runners themselves?  I have a feint recollection of turning up at Trafalgar Square in 1993 or 1994, and being marshalled by the wonderful Paula Dawes – the Alzheimer’s Society’s then head of fundraising who did more for staff and volunteer motivation with her gigantic fundraising thermometer on the wall than any excel spread-sheet produced for a committee – to cheer on just over 20 runners on a dreary Sunday morning.  Last year, the number of people running for the Alzheimer’s Society was nearer 400 I believe.  That seems a pretty incredible rise in the numbers.

The links to medical research do not end there.  For 31 out of the last 34 years, there has been a London Marathon Medicine Conference which looks at the medicine and science of marathon running.  It is also proving to be a teaching and research opportunity for sports scientist students.  However, I would be interested in knowing whether anyone has published a scientific paper about, or run a clinical trial involving, London Marathon runners?  Forgive me for not knowing that, if there has been.  Perhaps the only thing we lack is a few more significant medical research landmarks along the route; The Crick in 2016?  It might be one for the public engagement team there to think about.

Philosophically I wonder whether there is something deeper that draws together the modern penchant for running marathons and our commitment to, or support for, medical research?  The metaphor of the marathon certainly serves us well in health conjuring up images of commitment, camaraderie and the joy of reaching the finishing line.

For example, my good friend and colleague, Derek Stewart, has written before about the similarities between his progress as a runner and his journey in public involvement in research.  I also remember from my time at the Alzheimer’s Society an article written by a carer, comparing the years spent tending for their loved-one to that of running a marathon.  It became a very popular piece among fellow carers and supporters.  How many times have we also heard scientists and researchers talk about the long process from scientific discovery to viable treatment of therapy?

For this writer (and I am not a runner) the act of doing a marathon is a symbolic nod of respect, a doffing of the cap or handshake of support, in recognition of what it takes to live with ill-health and to find a remedy.

And we shouldn’t forget that the London Marathon is just one of many such events that take place up and down the country throughout the year – a good few in the park behind my house in South London – where people are going that extra mile for research.  Indeed, considering  the UK is second only to the Netherlands (70% versus 78%) in Europe terms of the number of people saying they have donated money to fundraising campaigns for research – the Europe-wide figure is 39% – that’s one gutsy performance by our marathon runners.

It also reinforces what I think is the key message that emerges from the recent IPSOS Mori/Department for Business Public Attitudes to Science report [by the way this is a superlative piece by Alice Bell in The Guardian about itHe blog is worth checking out too] . Namely, that you may be able to make an argument that the British public’s understanding of science leaves much to be desired.  But you can’t fault their gut instinct in support of it.  And what better symbol of that, than their staying the course over 26.2 miles.

Good luck to them all.  And, if any should be reading this afterwards while nursing aching limbs and sore feet, thank you.



Fight the good fight: medical research charity advertising slogans

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

Comment: So what next for

The fundamental issue at stake here is respect for the citizen.

The last month of debate about feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper?

Many will say that NHS England – who yesterday announced a six-month pause in the scheme – have taken the biggest hit. But no one emerges with great credit from this affair. For citizens are non the wiser one way or the other. They have been ill-served by policy-makers on both sides of the debate, as they have been on this issue for as long as I can remember.

I should say that I support

I think that it will be a secure system but that there are always risks. And no guarantees. I buy into the notion that it is important to future medical research. But I think the claims around this are often exaggerated and don’t do their proponents any favours. I think a form of ‘opt-out’ is the most practical option and in keeping with the values that most of us hope underpin the NHS. Yet I also think that we should have the right to change our minds if and when our life circumstances change.

I think the professions have played fast and loose on the issue for too long. After all, a lot of their power within the system is locked into the current status of yours and my medical records and data.
When we developed the ‘Your health records saves lives’ leaflet many moons ago, citizens were more willing to share their data than GPs who tended to take up a highly paternalistic stance. However, more than a few were less and less paternalistic about their patients when it came to the prospect of working with pharmaceutical companies and being rewarded for it.

Anyway, that’s an aside or should I say unwarranted broadside. But I am afraid that and the years of debate about data preceding has often been a case of policy-makers being, at best, neurotic and, at worst, mistrustful of their fellow citizens.

Fact is that I have been able to form an opinion because I have had an opportunity to listen to, and interrogate, the arguments at close quarters. And that is what was so wrong about the leaflet campaign. In tone and style and delivery it was dismissive of the citizen and their right to question and form an opinion. Would it have been different if NHS Citizen had been in place I ask? Could it not be the perfect issue on which to test and perfect this initiative? Or is that too much to expect?

As an example of how ‘national’ and ‘local’ can work together in the new NHS to roll-out national initiatives, has been a disaster. Whatever happens over the next six months, the initiative must be co-produced with citizens at source, and its delivery collaborative effort by NHS England working with Healthwatch, patient groups, GP Participation Groups and many other partners. If means that much to our nation in terms of health and wealth, we should spend the time and money in investing in our citizens to understand why.

And, lastly, if researchers and doctors and managers want a lifetime of yours and my data to work on then they need to do more to develop a relationship with citizens about its importance and how we can be better custodians of it. A few weeks ago a head of an NIHR Biomedical Research Centre was telling me how their NHS Trust is now including short statements in letters to patients to help grow understanding about how data is used. It is a small example of the level of visibility we need for this important aspect of delivering care in the future.

Fact is, if we want a 21st Century NHS, we need a 21st Century attitude to involving citizens in decision-making.

My view on that pancreatic cancer ad campaign

The charity Pancreatic Cancer Action have caused a storm with their new ‘cancer envy’ advertising campaign in which patients are pictured saying things like: ‘I wish I had breast cancer.’

So if it’s shock tactics they were after, and public attention to go with it, then they must be delighted.  As must the advertising company most of all. Job done, they will be saying I suspect.

One can understand the temptation for charities to go just that little bit further in making us sit up and notice.  More charities than ever before are competing for yours and my funds. They are, I believe, genuinely motivated by a desire to make sure potentially life-saving messages get through to us.  But do the ends really justify the means?

I can remember two occasions in my charity career when judgement calls needed to be made about advertising.  At the Alzheimer’s Society in the mid-nineties the staff recoiled at a proposed advertising campaign showing a brain scan with the slogan ‘It blows your mind.’ But when tested with people with dementia and their carers they loved it. They felt that the time was right to shock people a bit. So we ran it. All seems a bit tame now twenty years later.  I can’t even find the posters on the internet.

More recently when I was at Ovarian Cancer Action I looked at some proposals for a ‘shock’ advertising campaign and would have probably signed on the dotted line if I had had a choice.  But I was persuaded otherwise by colleagues.  Looking back, they were right and I was wrong.  There was little evidence to suggest there was the appetite among patients and carers for such a message at that time.

The reason for telling these stories is simply to make the point that – as with much else in running a charity – things get dangerous once you get too far ahead, or too far behind, your beneficiaries and how they think and feel.  To be fair to Pancreatic Cancer Action it does sound as if people with pancreatic cancer have been involved in the campaign.  They feature in it at least anyway. The founder Ali Stunt makes this point in her blog about the campaign yesterday. Although the fact that -as far as I know – other pancreatic cancer charities are not clamouring to endorse it might suggest that they are hearing otherwise on the ground.

On This Morning earlier today, the resident TV doctor, Dr Dawn, said the controversy about the campaign was based on a misunderstanding of its message.  The charity is wanting people to go to their doctor with possible early symptoms to get them checked out as possible.  Fair enough.  But if the message is being obscured by the medium’s ‘shock tactics’ then I would say the campaign is failing in its objectives.  I could understand it a bit more in a strange way if it was a cool fundraising pitch but not as a health improvement campaign.

I do agree with others that the charity has crossed the line into quite dangerous territory in which we are being asked to consider whether one disease is nastier than another. Is that really what charities want now? As Breakthrough Breast Cancer have said today: ‘It’s not a competition.’

It’s a matter of judgement at the end of the day.  And I am no Mary Whitehouse.  But in my opinion the charity has made the wrong call.

I just hope it’s not counterproductive in the long run.