CMO

It is said that when Robert Sherman sat down to write ‘A Spoonful of Sugar’ he was inspired by his children’s tale of being given their polio vaccine on a sugar cube.

The iconic song from Mary Poppins, lyrically captures a moment in time when the relationship between society, medicine and research was a more unquestioning and optimistic one. In such a state we all propped one another up with convenient folklore: all medicine is good for you it just needs to be sweetened to make it more palatable.  A suppliant population served medicine well, just as an over-confident profession let the population off from asking questions.

But now, over half a century later and after years of sugar-coated pills and doctors being given sweeteners by industry – this settlement is unravelling. Such is the level of concern at the fractious relationship that now exists, that the Chief Medical Officer, Professor Dame Sally Davies, last year knocked on the door of the Academy of Medical Sciences (AMS) for help.

What worries her most, she said, is the sense that society neither trusts its doctors to prescribe drugs appropriately; nor researchers to develop the evidence in an unbiased fashion. ‘How can we hope to improve the public’s  health if the public see less and less reason to believe us?’ is the underlying message.

The Academy is now undertaking an inquiry into how society can best use evidence to judge the benefits and risks of medicine. It is looking at a range of issues – from research methods to conflicts of interest and media reporting of medicines. I am a member of the inquiry along with Suzie Shepherd from the Royal College of Physicians Patient Network. A public dialogue exercise is planned later this year.

These activities will be important. But it occurs to me that the real task ahead is for us all to embrace that which currently seems most threatening. To encourage patients to ask more questions of their doctors and doctors to do the same of their patients. To turn the surgery into a place of shared inquiry where patient and doctor set out to search and understand the evidence together. It should not be to shore up the traditions and disciplines of yesteryear but to refute the sentiment that underlies them – as expressed in the song ‘The Life I Lead:’

Tradition, discipline, and rules must be the tools
Without them…Disorder! Chaos! Moral disintegration!
In short, you have a ghastly mess!

I seem to remember that when Mary Poppins is challenged she  famously replies, ‘I don’t explain anything.’ So it is that until now too many doctors have shown no inclination to explain to patients what they need to know. While those that do, tell me they do not have the time to do it as well as they would like.

In the meantime, patients lack the sort of informatiom presented in a way which will help them ask the right questions. As well as the support to help them make the right decisions for themselves and their family.  And yet, and yet, we could also assume greater personal responsibility for knowing ourselves and our health than relying on hearsay and folklore whether passed on by Disney or anyone else. To not be distracted by the whistling of a happy tune.

It’s a brave person or organisation that attempts to take Mary Poppins down. Even when she has been weakened by a sugar tax.

But it should be evidence, in the end, that we look for to help the medicine go down.

The Wellcome Trust have this morning put out the results of a very interesting study about public understanding of antibiotic resistance.

The research by Good Business found that people struggle with what the term ‘antibiotic resistance’ means, and are more comfortable with alternative terms such as “drug-resistant infections” or “antibiotic-resistant germs.”  Also that, because of the way we are communicating about this issue, they do not see it as relevant to them nor a problem they can do something about.  However, once they were given practical examples of what it could mean to them and their families they then became more receptive.

That’s troubling given that antimicrobial resistance featured on the National Risk Register of Civil Emergencies for the first time this year.  This is an issue that the nation can not address with science alone and needs its citizens engaged.

This is not a large study – just over 60 people took part – but it is a telling one perhaps.  By talking over the top of people’s heads, not thinking wisely about the language we use, and above all failing to relate it to their busy, everyday lives we are missing opportunities to enlist them in this important national fight.

The Wellcome Trust have already said they will adopt different terms now when talking about this issue.

But this study underlines that effective communication is also about getting personal.

A curious story caught my eye in the Sunday Telegraph.

It told how High Street retailers are sending adverts and money-off coupons to the mobile phones of passers-by.  Soon, they hope to be able to track people through their shops; when they pass the sock counter or the delicatessen they’ll get more messages about the unbelievable in-store offers.  Or order coffee without spending time in the queue.

A representative of the mobile phone company, Samsung, is quoted as saying: ‘This is about using smart technology to make life more efficient and productive.’ Spoken like a true salesman.  Consumers want the best possible deal. Shops are good at delivering. All with their consent, naturally. Over and out.

It’s all too easy to condemn our High Street colleagues for what some might call ‘predatory marketing’  But the fact is that they are simply jumping where others – Government public sector organisations, charities etc – would dearly love to go in the name of better health care and patient benefit.  And who can blame them? Or should I say, us?

Yes, to be honest, if I could have wired everyone’s phone on International Clinical Trials Day (ICTD) on 20 May so that NIHR”s ‘OK to ask’ campaign appeared on screen as they walked by their local hospital or GP surgery I would have done it.  Sorry.  But the message just seems too important to leave to chance. (I do, as it happens,  get lots of recorded voicemail messages about PPI, it’s just the wrong sort!).

As a reviewer I am seeing more proposals than ever before for using mobile technology or social media to nudge the behaviour of fellow citizens this way or that.  But they all seem to be a bit, er, basic compared to the sophistication of what’s happening in the private sector.  Nor can I get rid of a nagging feeling that companies know their consumers better than we know our patients.  We could learn something from them I am sure.

In Saturday’s Daily Telegraph (where a shorter version of the mobile phone story also appeared) there was another article about M&S becoming the first retailer to add Vitamin D to bread.  This in response to the well-document explosion in the number of cases of Rickets among children, a disease thought as good as eradicated in these shores just a short time ago.

(As an aside, you could argue that there’s not a great deal of difference between unprompted messages on our mobile phones and  putting more vitamins in our food. Both are intended to be for our benefit.  Both are covered by the small print which many of us will never read.  In each case the provider can argue that the choice is ours.)

Nonetheless I tend to agree with the quoted hospital consultant – Chris Coulton – who queried the impact of the retailer’s move and said he’d rather see more attention paid to public awareness and education.

Or we could combine both, of course. In fact whose to say that one day we shouldn’t be able to open that loaf of bread from the supermarket, scan the bar code and get all the information about Vitamin D that we want, how it’s important, alternative sources and then allow us to monitor our intake with the inevitable downloadable app.

Nanny state? Perhaps.  But it’s got to be better than the sliced bread currently on offer, hasn’t it?

This has got a bit lost in the hurly burly of the last few days.  It is important that it does not remain so.

The National Institute for Health Research (NIHR) Senior Investigators – of which there are around 200 I believe – are the very best of the very best researchers across the organisation.  NIHR is about to start its 8th competition to appoint new ones.

Senior Investigators are important leaders in their own field of science.  But they are also regarded as leaders in policy and practice across NIHR including public involvement.  They therefore play an important role in setting the tone, style and pace for those around them, particularly tomorrow’s Senior Investigators who are just starting out on their careers.

To coincide with the impending selection process – when applicants will be asked to demonstrate their public involvement credentials to a panel which includes patients and members of the public – INVOLVE has produced this excellent booklet: Senior Investigators: Leaders in Patient and Public Involvement in Research in which five of their number talk about the importance of public involvement and the difference it has made to their work. The five are:

Dr John Bradley, Director, NIHR Cambridge Biomedical Research Centre

Professor David Gunnell, Professor of Epidemiology, School of Social and Community Medicine, University of Bristol

Professor Elaine Hay, Director, Institute of Primary Care and Health Sciences Centre, Keele University

Professor Hywel Williams, Professor of Dermato-Epidemiology and Director, Centre of Evidence-Based Dermatology, University of Nottingham

Professor Sue Ziebland, Director, Health Experiences Group, Nuffield Department of Primary Care Health Services University of Oxford

In her foreword, Professor Dame Sally Davies, Chief Medical Officer and Chief Scientific Adviser at the Department of Health says:

“In the past I have called on our NIHR Senior Investigators to help lead the way in embedding patient and public involvement into the culture and ethos of health and care research…….By their leadership, they are enabling the creation of the best possible environment for patient and public involvement in research to flourish. They are using their influence and conviction to place the interests of patients and the public at the heart of all our activity – from individual NIHR funded research projects, training programmes within the Faculty to arrangements within commissioning and infrastructure provision.”

and…

“There is much to learn from the experience and excellent practice of these inspirational individuals. They so clearly show what a massive difference patient and public involvement makes and why it remains fundamental to our success.”

 

Delighted to see today’s announcement by the National Institute for Health Research (NIHR) of the new NIHR BioResource. 

The importance of the new BioResource (the main website for the BioResource is here) is underlined by the fact that not one Minister but both the Secretary of State for Health, Minister for Health plus the Chief Medical Officer, Professor Dame Sally Davies, are quoted in the announcement.  Lesser events are lucky to get one of these on paper.  More than three (or, come to think of it, none at all) and it usually means we are talking about a crisis.

The NIHR BioResource is a shared enterprise that spans a number of our world-class Biomedical Research Centre (BRC) facilities in Cambridge, London (multiple sites), Oxford, Newcastle and Leicester.

But, at its heart, is a population of 75,000 volunteers – patients, family members and others – who wish to help further clinical research across a range of conditions.  As NIHR says in its announcement:

‘[NIHR BioResource] provides a national recallable resource of volunteers of patients, their families and from general population who wish to participate in clinical research across a wide range of studies. Volunteers provide clinical information and samples that allow them to be recalled by their genotype and phenotype (their physical characteristics) for experimental medicine studies and early phase trials.’

This time last year I was fortunate to visit the NIHR Cambridge BioResource Centre at Addenbrookes Hospital.  I came away being very impressed by the passion and commitment to public involvement shown by its leadership team including Dr John Bradley, the Director of the Cambridge BRC.

It was clear that they had done much to involve patients and the public in what they do but wanted to get better at it.  I seem to recall that much of my meeting with them was about how to involve the public more in the running of the BioResource, promoting it to the local population, and using what they learned to benefit other NIHR facilities in Cambridge as well as much wider.  The opportunity (and challenge!) for the future will be how to make public involvement relevant and effective across all the BioResource sites.

If you want to volunteer to take part in NIHR BioResource these web pages will tell you more.

It is great to see our drugs watchdog, the National Institute for Health and Care Excellence (NICE), make such a bold statement today that all children and young people with cancer should be given the opportunity to take part in clinical trials and research.

The statement, which is one of seven making up NICE’s ‘Quality Standard’ for ‘Children and Young People in Cancer,’ also supported by cancer charities and the Royal College of Paediatrics and Child Health (RCPCH) says:

2. Children and young people with cancer (aged from birth to 24 years) are offered the opportunity to take part in clinical trials (which carry out research into new treatments) that have been identified as suitable for them and are supported to participate in these trials if they want to.

I’m not aware of NICE leading off with such an explicit statement about the importance of clinical trials when launching such a major piece of work before. In fact I am not aware of access to research being included in NICE’s other quality standards  – I looked at the one for diabetes in adults produced just a few years ago for instance – and certainly not as one of the core commitments.

NICE goes onto say in its news release that the key reason for it being included is the evidence that participation in research leads to better outcomes for children and young people with cancer.  It follows concerns voiced by clinicians, patients, researchers and others that children are missing out on vital medicines because of EU rules that allow them to only be tested on adults.  And last year we saw the CMO make a similarly strong recommendation in her annual report about the participation and involvement of young people in trials.

There is a lot now happening across the world of children and young people in research.  At least in terms of discussion and debate.  At yesterday’s INVOLVE Advisory Board we discussed how we could most usefully support this discussion and ensure it heads in a fruitful direction.  We will discuss the matter again with all our members in the Spring.  Industry and the charities are also committed to moving things along. The important point for me is that we ensure that our young citizens are at the forefront of this developing agenda.

One last thought….Wouldn’t it be great to be able to cut and paste this statement and make it work for all conditions and all age groups?

So this feels to me as though common sense has been snatched from the jaws of defeat at the feet of academia.

The initial announcement of a ‘genome mapping initiative’ by the Prime Minister in December was followed by not very convincing noises about the shape of things to come.  Indeed, I fired off a couple of emails about public involvement and engagement and was non too impressed by the responses.

Today the Secretary of State, Jeremy Hunt, used the 65th birthday of the NHS to announce the follow-up move to his boss’ announcement.  This comes in the form of an independent body called ‘Genomics England.’ From a public and patient standpoint these pages on how ‘Genomics England’ will work seem to be the most important ones to review.

There are some clear statements here about consent and other issues to do with practice.  The overall message seems to be that ‘engagement’ is one of the top priorities of the new organisation in these first few months in particular.  Also that the door is open to ideas and proposals for a governance approach and mechanisms of involvement which reflect patient and public interests.  As an aside, the focus on rare disease will please many.

Fully accept that not everyone will be happy or convinced.  And I am ever the optimist.  But I am afraid that’s the only way I know how to approach these things.  What is it that I heard Baroness Pitkeathley once say?  Campaigners are ‘positive, persistent and patient.’