Chief Medical Officer

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.

Yesterday I joined colleagues from the Medicines for Children Research Network (MCRN) to present the report of the Generation R event last year, to the Chief Medical Officer (CMO), Professor Dame Sally Davies.

For many people Generation R at the Science Museum was the highlight of 2013.  It was designed, organised and delivered by young people, one of whom, Nadia, joined us yesterday.  She spoke movingly to Dame Sally about how honoured she felt to live in a country where it was possible for young people to be involved in research in such a way.

The report includes 11 recommendations.

#AllTrials campaigners will welcome the recommendations that: ‘Summary level results should be made publicly (open access) available for all clinical trials.’ And that: ‘A patient specific (confidential) results feedback sheet [should be made a (sic)] mandatory part of the research process (as is the Patient Information Leaflet).’

Other recommendations cover the desire to see more being done by the pharmaceutical industry to involve young people in research, and the need for a greater focus on clinical research in schools education.  The latter sounds like one for Ben Goldacre.

MCRN, which is now highly influential internationally as well as at home, is already taking the lead in addressing the report’s first recommendation: ‘Ethical challenges of paediatric research: work with key stakeholders including parents and young people to identify solutions on tackling the major challenges.’  It has already linked-up with the Nuffield Council for Bioethics and the Royal College of Paediatrics and Child Health (RCPCH).

For INVOLVE’s part our advisory group have already highlighted young people’s involvement in research as a priority topics for this coming year.  Perhaps you might have some good ideas on what we might do, resources permitting of course?  Undoubtedly we will want to help bring people together from various organisations to keep the momentum up.

It was good to hear how personally supportive the CMO is of the Generation R initiative and young people’s involvement in research generally [the programme from Gen R last year was one of the brochures in the waiting room].  You will recall that young people were the focus of her annual report last year and that it includes a recommendation for their greater involving in designing clinical trials.

More power to our elbow.  Let’s make it count.

You can also read the report by clicking on the picture below.

Gen R Report front cover

The Chief Medical Officer, Professor Dame Sally Davies, published her annual report today.

Actually, it’s two reports. The first is the usual state of the nation summary of the population’s coughs and splutters. The second, uniquely this year, looks in depth at the worrying lack of attention we have paid to young people’s health. It’s entitled ‘Children Deserve Better.’

You have probably caught some of the news reports about this already. These have focused on things like the re-emergence of ricketts, and the high mortality rate among children in our country when compared to places such as Sweden.

One of the benefits of the nation’s doctor also holding the role of being the nation’s chief clinical researcher (Director of R&D at the Department of Health) is that in her deed and word, the bedside is never too far from the bench, and vice versa. We must make the most of it while it lasts.

So, in the report on children and young people’s health I am delighted to see that Dame Sally has followed up on her comments and highly vocal commitment at the recent Generation R event in September (see previous blogs) by including the following recommendation:

Recommendation 23:
The National Institute for Health Research (NIHR) Clinical Research Network, including the NIHR Medicines for Children Network, should work with children and young people to input to the design of clinical studies in order to facilitate increased participation of children and young people in drug and other trials.

That’s a clear steer to me and others across NIHR and elsewhere to make this happen. I know personally how much Dame Sally is interested in this area, simply by her frequent nudges to me to make sure young people are part of NIHR’s strategy and plans for public involvement and their wider access to research.

Speaking as a pseudo policy-maker the key now is not for us to receive a myriad questions by email but solutions and ideas on how we can achieve this on a larger scale than we have already managed.

For we start from a good base in the UK when it comes to involving young people in research. The model we have adopted in the Medicines for Children Research Network is feted and being copied by many abroad (Canada for one). But there is much more we can and should be doing.

Children deserve better.

What was it that the author, William Golding, said when asked if he went to church? ‘No I don’t, and I don’t think God does either.’

I feel the same about medical research conferences. They often seem to be places where people go to worship the science rather than what it can do for people.

The dilemma for patients and the public is that we know these cathedrals of science can be where a whole new testament for treatment and care is written.

So we seek to go along only to find ourselves knocking on a closed door. Or allowed in but not permitted to take part.Sometimes we get to sing a small part on a panel. Occasionally we are allowed to give a reading. It is better than it was but not greatly.

Thankfully there are people turning this tired pantomime and the stale format that results, on its head. Yesterday’s ‘Generation R’ event was an exemplar of how things could and should be.

The event – and it really was an event – was designed and run by members of the Medicines for Children Research Network (MCRN) Young Persons Advisory Group @MCRNYPAG. Some have been participants in research. All are involved in its design and delivery. Their energy for the subject is palpable. Yep, that’s right, they see science rather than themselves as the subject of study.

What’s not to like about an event where you are greeted by smiling young people in ‘Red for Research’ t-shirts, can drink science cocktails in the afternoon, told that suits are not allowed, and are invited to think differently for a change?

It was the decision to run the morning in a tv show format that was the smartest move by these young people. Instead of death by PowerPoint we were involved in a a flowing discussion. Themes were allowed to unfold and develop. Should young people receive payment for taking part in research we were asked. Some said yes. A girl spoke passionately from the floor: ‘Knowing it benefits other people is enough of a payment for me.’ And in one sentence impassioned us all.

The Chief Medical Officer, Professor Dame Sally Davies, was just one of many who was interviewed on the TV sofa. The afternoon saw delegates discuss a diverse range of topics. From how to get people’s consent to take part in research in emergency medicine, to how to raise awareness of research among young people.

Candour was aplenty. So was laughter. We had reportage from around the country and even a weather forecast promising sunny spells for public involvement.

If young people have anything to do with it I think we might actually have a heatwave.

Rather than just tweet this as a link, I thought some background was needed.

This is a ten minute extract of a much longer interview I did with Professor Sally Davies, Chief Medical
Officer and Chief Scientific Officer at the Department of Health. The interview came at the beginning of a two-day
NIHR training camp in communications. In typically candid fashion, Dame Sally covers the role of the media, preparing for interviews,
leadership communications and the importance of public involvement to NIHR. Personally I think it’s quite a thoughtful dialogue.