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

The Generation R event – organised and delivered by young people in research – has to be one of the highlights of my year.  You can find a write-up from the September event here.

Today the Generation R crew sent me a postcard about what is happening next.

Note the key messages to emerge from the event with respect to the reporting of research results and the involvement of young people in research design and delivery.  The latter chimes with this year’s recommendation in the CMO’s report.  The former is in tune with the #AllTrials campaign.

Really can’t wait to see what these impressive research champions emerge with in the New Year.


GenR key messages

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.

Been meaning to post this for a while and not just because the poster design is going to brighten up my blog pages for a while.

Our Medicines for Children Research Network (MCRN) really has been an exemplar for involving young people in research.  Find something as good across Europe and I will eat my hat.  Its young person’s advisory group are now hosting a conference of their own – with the support of the Garfield Weston Foundation and the Centre for the Developing Brain, and Generation R – Trust and at the Science Museum on 11th September 2013.  Further details on the poster repos below (sorry can’t make them larger) but this link will also enable you to register your interest in going.

Page 1MCRN2

So, earlier this week, I wrote a very brief  blog about a visit to Nottingham where I met some of the staff from the Medicines for Children Research Network (MCRN) in the East.

They have recently adopted a new ‘red for research’ uniform that all staff have to wear in clinical settings.  You can read more about it in their newsletter here including the different reactions of patients and other staff.  At the time I asked whether we should adopt the ‘red for research’ tunic across the NIHR Local Clinical Research Networks (LCRNs)

I have not done a poll on the blog for a long time he says with sweated brow….

This deserves a wider audience.

During my visit to Nottingham yesterday I met some of the staff from the Medicines for Children Research Network (MCRN) in the East.  They have recently adopted a new ‘red for research’ uniform that all staff have to wear in clinical areas.  You can read more about it in their newsletter here.

It is interesting to read the different reactions.  But it also shows how a very simple change can make research a talking point, which is what we want.

Should we adopt this across NIHR Local Clinical Research Networks?   Personally I think we should.

Have a good weekend.