Professor Dame Sally Davies

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.

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?

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

It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not for him.

No more so than Sarah Boseley’s article  in The Guardian on Friday .  She deals with the way in which Nelson Mandela changed the HIV/AIDS agenda.   Her piece focuses on Nelson Mandela’s speech at the international Aids conference in Durban in 2000 – arguably a key turning point in the fight against the disease.  His words refocused the minds of warring scientists, activists and politicians, on tackling what mattered most: the human tragedy being played out on the African continent.

Sarah Boseley inspired me to dig out the text of his speech and here it is.  I hope you will find just five minutes today to read it.  Even on the page it is a beautiful piece of oratory. You can hear Nelson Mandela’s voice so clearly.

Two extracts struck me as particularly relevant to the discussions at the G8 Dementia Summit in London tomorrow:

“Now, however, the ordinary people of the continent and the world – and particularly the poor who on our continent will again carry a disproportionate burden of this scourge – would, if anybody cared to ask their opinion, wish that the dispute about the primacy of politics or science be put on the backburner and that we proceed to address the needs and concerns of those suffering and dying. And this can only be done in partnership.

I come from a long tradition of collective leadership, consultative decision-making and joint action towards the common good. We have to overcome much that many thought insurmountable through an adherence to those practices. In the face of the grave threat posed by HIV/AIDS, we have to rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so now, and right now.”

..and finally:

“The challenge is to move from rhetoric to action, and action at an unprecedented intensity and scale. There is a need for us to focus on what we know works.

We need to break the silence, banish stigma and discrimination, and ensure total inclusiveness within the struggle against AIDS; those who are infected with this terrible disease do not want stigma, they want love.”

I am not making a comparison between HIV/AIDS and dementia.  But Nelson Mandela’s words embrace eternal themes that are well worth remembering on the eve of tomorrow’s summit.

The G8 Dementia Summit programme was published yesterday and can be found here.  The website will also have coverage of the meeting all day tomorrow I believe.

My good friend, colleague, former carer to her mum, Peggy, and campaigner, Susie Hewer, has a piece on the dementia summit website about her own experiences with dementia and what the summit means for her here.

My previous blog on the G8 Dementia Summit can be found here.

BBC coverage of Nelson Mandela’s memorial service taking place in Soweto today is here.