medical research charities

I hope you will have seen or heard the news today of the positive results of a gene therapy trial for people with cystic fibrosis. And this is how The Guardian is reporting it.

Although it is early days and the improvement shown in patients only a modest one, it is nonetheless a very hopeful sign of how this approach may help people in the future.

I have no direct experience of the disease, but one of the most affecting and poignant patient stories I have witnessed was by a young woman with cf at an event at the political party conferences many years ago.  It has stayed with me ever since.  It has caused me to have a particular emotional interest – if I may call it that – in the condition.

The trial was conducted by the Cystic Fibrosis Gene Therapy Consortium which brings together scientists in the Universities of Oxford and Edinburgh with Imperial College, London.  They were formed in 2001 at the initiative and with the support of the Cystic Fibrosis Trust (CF Trust). The Trust has invested £40 million in the consortium since then and continues to do so (it announced a further £500,ooo funding just earlier this year).  But the funding environment for these sorts of projects is never easy and a few years ago the Consortium formed ‘Just Gene Therapy’ to bolster existing funding from the National Institute for Health Research (NIHR), Medical Research Council (MRC) and others.

So, the back-story of this important news today is one about the length of time it takes to do this sort of work, the importance of collaboration and the pioneering role that medical research charities have in supporting ground-breaking science.

But, above all, it is a testament to the cf community’s as a whole.  Their positive, persistent and patient backing and support through their donations.  The patients who took part in the trial, some as young as 12.  Without them, we wouldn’t be hearing this news today.

There are two ways to get to Dublin City Centre from the airport by taxi. You can either join the traffic that wends its way slowly overground. Or you can take the Dublin Port Tunnel which gets you there in no time at all. On behalf of all harried travellers, can I thank the person who had the vision of a tunnel.

I was in Dublin on Tuesday to attend the Irish Health Research Forum’s conference on public involvement. The Forum was set up earlier this year following a study of the research landscape in Ireland conducted by Professor Bernie Hannigan and commissioned by the Medical Research Charities Group (MRCG) of Ireland. It is worth mentioning that Professor Hannigan has recently been appointed the Director of R&D at Public Health England.

The Hannigan report entitled: ‘Health Research Landscape in Ireland: What Researchers Say’ recommended that MRCG bring together a wide coalition of partners to promote and advance health research (the aforementioned Forum). But also that there needed to be more focus on the development of public involvement. Hence yesterday’s event, a first I believe.

It was flattering to say the least that the Forum had turned to some familiar names from the UK to provoke thought and discussion: Angela Coulter from Oxford, Jennie Poppay from the University of Lancaster and Liam O’Toole from Arthritis Research UK. We are undoubtedly further ahead of them in many ways in putting public involvement on the agenda. As are other countries such as Denmark represented there by Mogens Horder.

But as we were quick to stress, it is too easy to let the shine of our successes blind us from seeing our failures over the last twenty years. They may well learn from these but we can and should also learn from the fresh approaches they will take. And with emails in my inbox from Sweden, Norway, Canada and France, we can be sure of new and innovative ways forward. A fact that is both inspiring and exciting.

Thinking about the Forum and its future role, I believe that one important and highly strategic failure has been our inability thus far to develop a shared vision among charities, Government funders, HEIs, industry, NHS England and academia about the future role of the public in health research. There have been attempts, not least through the United Kingdom Clinical Research Collaboration (UKCRC). The problem isn’t so much that people are doing their own thing. It is that these ‘things’ aren’t pushing in more or less the same direction.

Another – and I should credit Jennie Poppay for saying this at the meeting but you will here me say a great deal more about it in the coming weeks – is that lots of reasons (good reasons I should add) are given for doing public involvement. From making it more accountable to increasing the numbers of people in a study. However, focus on these reasons and the activities that might support them has perhaps led to us astray from our original purpose.

This mission is for the health research system to treat the knowledge that patients and the public gain through experience, as currency of equal value to other forms of expertise in the knowledge economy that’s going to be necessary to create to improve health and wellbeing.

I also enjoyed the comments by Eibhlin Mulroe, CEO of the Irish Platform for Patients’ Organisations, Science and Industry and Task Force Leader, EUPATI Consortium. As someone who has just entered the sector she reflected on how amazed she was that in medical research we don’t do what’s second nature and talk to the market first about the products that are needed and desired.

Hear, hear. That’s just tunnel vision. And to be avoided at all costs.

I notice that there has been a fair bit of news generated today by the charity, Autistica, who have published a study showing that autism costs the UK £32 billion per year in terms of treatment, lost earnings etc.

The study was conducted by researchers at the London School of Economics (LSE) and follows one some years ago which put the cost at £27 billion. This latest research uses new data to update that figure.

The numbers are mind-boggling. Particularly since they would seem to show that autism is more expensive than cancer because of the lifespan of care someone with autism needs. Also that only £6.60 per person is spent on autism research compared to £295 on cancer research.

The data has certainly challenged my assumptions and, indeed, made me go searching for more information. I did not realise, for instance, that approximately 600,000 people have autism in the UK.

It has become more and more common in the last few years for charities to publish these sorts of studies. A key motivation – if not the prime one in many cases – is to draw public and political attention to their cause. So Austistica have certainly succeeded on this score.

Alongside patient stories such numbers can also be powerful in portraying the extent of unmet need in a patient population. And this can be both useful and impactful in a number of scenarios. For instance, a reviewer looking at a grant proposal might find it helpful to see such evidence in reaching judgement about the value of what is being proposed in terms of patient and carer outcomes. One can also see them being useful, when looked at with other data, to think about the planning of future health and social care services.

But as a pitch for more money to go into medical research? I am not so sure. Perhaps with the public as part of a well executed fundraising strategy. However, when it comes to politicians and in particular Government I have yet to see strong evidence that it makes an indelible mark or, more importantly, leads to significant changes in funding.

Fact is all Governments of every shade have now developed a thick skin when it comes to such pitches in the same way that cricketers have got used to bowlers pitching bouncers at them.

As Governments must. To give in would simply lead to an unedifying bidding war. As well as short-circuiting the pretty good mechanisms for determining how funding is currently distributed including – in NIHR’s case – the use of methodology such as the James Lind Alliance Priority Setting Partnerships (PSPs) to determine patient priorities.

Such numbers are therefore blunt instruments. But there’s always an exception to every rule. And on this basis, good luck to them.

It has been an interesting 24 hours for some of our goliaths of research funding.

Starting with the positive, Cancer Research UK (CRUK) rolled out its new research strategy this morning: ‘Beating Cancer Sooner.’ Its bold new vision is to see 75% of people surviving the disease in the next twenty years. That’s compared to the 50% who survive today.

And it’s aiming to inject a good deal of new cash raised from the public to achieve its ambitions. Over the next five years it wants to double the amount it raises from supporters. Without checking the figures, I would have thought that this would put it well on course to being the first public fundraising charity investing around £1 billion on behalf of its beneficiaries.

I like the commitment in the strategy to use this money to support young scientists and the focus on rarer cancers and young people with cancer.

There is only one sentence in the strategy directly about public involvement as far as I can see. In this it talks about wishing to increase the opportunities for patients and carers to be involved in research – the charity has long been criticised that it does not do enough on this front.  But it has recently advertised for its first ever ‘Director for Public Engagement’ and has been consulting others on where it can make the most difference in this field.

So watch this space would be my counsel. The thing to remember about organisations as big as CRUK, is that they can take a long time to turn round. But when they do, their might can be considerable in changing the wider culture and environment. So who know, in five years time we might all find ourselves running to keep up with them.

Contrast Cancer Research UK’s move with that of the US pharmaceutical company, Pfizer, which has just announced a takeover bid for Astra Zeneca headquartered in the UK. The Guardian’s Ian Sample has written an excellent piece today about what it could mean for UK research.

The more you look at it the more it seems like the defensive act of an industry that has run out of ideas about how to face the future. Pfizer’s predatory antics only make that future dimmer in my opinion. Unless you are a shareholder.

My brief experience of mergers and acquisitions suggests that the subsequent story is rarely a happy one for the company taken over and its people. In fact, I would be interested to see the evidence supporting the notion that innovation burns brighter in the amalgamated concern. Or maybe it does but, like magnesium set alight in the school chemistry lab, briefly and destructively.

There is also a rather curious public involvement angle to all this in that Pfizer and Astra Zeneca are strange bedfellows when it comes to culture. I have been impressed by Astra Zeneca’s open embrace of public involvement and engagement in recent years. Pfizer’s is somewhat behind the curve to put it mildly. It would be a loss to us all if Astra Zeneca’s leadership in forging a better relationship between patients and industry is swallowed away. We shall have to wait and see.

I am afraid there is no getting away from the fact that what differentiates the pharmaceutical industry from public and charity funders of research is that pharma are under no real obligation to act in the public interest.

So we should not be surprised when they act against it.

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.

 

 

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

There’s a big push on #patientdata at the moment.

Leaflets explaining how patient data will be shared in the future are being stuffed through people’s letter boxes.  This is part of an initiative called ‘care.data.’

Medical research charities have meanwhile funded a national newspaper advertising campaign exhorting the benefits of sharing patient data for research. The ‘ad’ shows the face of a boy with the strapline: ‘Hello, I’m Peter: We haven’t met before but one day you could save my life.’

In marketing speak both initiatives – although more the former than the latter – have been accompanied by ‘noise disturbance.’

This includes some very valid criticisms of the leaflet and the way it has been delivered.  The inevitable spoiler campaign.  Not to mention the usual misinformation being reported and repeated without challenge.  Some of the news articles I have read leave you with the impression that sharing data is an entirely new activity across health and social care.  It is not.  What is changing is the way this is managed; for the better in my opinion.

Yet I am torn.  There is that part of me cheering the fact that our health service is making a concerted effort to engage people about data after years and years of dragging its feet.  Thank goodness we have begun to share the data dilemma, and everyone’s role in tackling it.

Then there is the communications professional in me that can tell you – without a shadow of doubt – that direct marketing and national newspaper campaigns are blunt instruments that rarely result in public understanding.  Unless repeated.  Unless part of a bigger and more varied campaign.  Unless pursued over the longer-term.  I read somewhere that the recall rate for national newspaper ads is something like 1 in 5 people and lots of variables drive how high or low that figure is.

I fear I sound churlish but my point is a simple one.

I applaud the campaign.

But we are going to have to work harder at this if we want the noise disturbance to subside into something more harmonious.  And that includes supporting regular conversations with patients and carers in those settings where the importance of sharing their data will feel immediate and personal rather than distant and impersonal.  As well as reminders at key points in their life.

My son just got a birthday card from our local football team – why can’t the NHS contact people when they reach the age of consent to tell them why the NHS is there, what it offers and their responsibility to it?

In the meantime you may find this piece by Dr Geraint ‘Big Data’ Lewis at NHS England helpful.  As well as this excellent graphic from Cancer Research UK about the benefits of sharing data from a research perspective.  I must say, despite CRUK being a monolithic organisation, I am feeling more positive by the day about how it is thinking about public involvement and engagement.

The moral case for public involvement in research is dead, long live the moral case…..

‘I was so angry when I found out how much money was being spent on Multiple Sclerosis research but how little patients and carers had been asked about how it should be spent,’ said my friend and colleague.  She was talking about the spark that lead to her own personal history of involvement in research.

I mention this because, at the moment, I quite often begin my talks and presentations with ‘why’ we do this thing called public involvement.  You can see the latest version of this presentation which I gave in Canada last week here.  The five ‘whys’ I focus on are in the picture below.

Why public involvement

I often talk about how these ‘whys’ are in the ascendant for many organisations now – over and above the moral case which perhaps dominated before.  But my friend’s comment is a timely reminder that morality is alive and well in this debate. Thank goodness.

In fact, for most of us, isn’t it the hand that pushes us away from the shore to begin our public involvement voyage?