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NICE makes bold intervention on clinical trials and children

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?

It’s out! Report of GenR young people in health research event presented to CMO

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

Young people in research have sent me a postcard, have a look….

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.

GenRpostcard

GenR key messages

CMO as good as her word on young people’s involvement in research

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.

Generation R: young people improving research event: 11 Sept 2013

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

Survey: Have your say in the #red4research debate: vote now!

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….

Turning ‘red for research:’ staff show their true colours

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.

Royal College looks to boost child health research with children’s charter

I am prone to beating up our Royal Colleges for one reason or another.  But, over the last few years, I have grown to admire and respect the work of one of their number in particular – the Royal College of Paediatrics and Child Health (RCPCH).

Yesterday, RCPCH launched a new report entitled ‘Turning the Tide: Harnessing the Power of Child Health Research’ which is part progress report and part agenda for change.  The College’s campaign will aim to:

  • Debunk the myths surrounding clinical trials – and push for the introduction of a system of ‘opting out’ of  studies designed to reduce uncertainties in treatments, rather than ‘opting in’
  • Bring organisations together in a UK “Children’s Research Collaboration” to optimise use of funding for research and raise awareness of the need to strengthen children’s involvement
  • Improve education, research training, and guidance for paediatricians: with the RCPCH pledging to improve research training for all paediatricians  and clear routes into research careers
  • Strengthen the infrastructure for children’s biomedical research in the UK by supporting the establishment of a children’s trials network for non-medicines as well as medicines studies, and children’s health sciences networks to share resources, and promote cross-institutional collaboration between paediatricians, adult physicians, and non-clinical scientists researching the early life origins of adult diseases

There’s a very powerful section in the report about what the NHS should be doing which you could read across many, if not all, other conditions.

Two additional comments.  The idea of a UK Children’s Research Collaboration (UKCRC! funnily enough - see yesterday’s blog) is a good one.  Quite apart from the greater co-ordination of efforts that would result, precedent suggests it will also help amplify the message (one of the points Richard Smith noted in his BMJ blog today about charities needing to work together more).  The arguments in favour are given further force this afternoon by the news that donations to medical research charities are now falling (see AMRC blog).  Quite simply it is about efficiencies of scale.

I’m also delighted that RCPCH and its partners are going ahead with the idea of a ‘children’s charter.’  The College seem to have developed a strong public involvement model of working and I went to one of their meetings with young people and parents a few months ago as part of the ‘Turning the Tide’ preparation work.  This was an idea that came out of that meeting and I am pleased it has gained credence with the report authors including Neena Modi, Vice-President at the College.  In setting out children’s rights and expectations when it comes to research I am sure we would all wish to support and applaud its development.

New paediatric research facility opens at Alder Hey

A new paediatric clinical research facility has opened today at Alder Hey Hospital in Liverpool.  Funding has come from the university, an Alder Hey appeal, and the National Institute for Health Research (NIHR).

A very important development for children and their parents and the region’s growing profile as a hub of nationwide efforts to improve child health. Click here for more details.

Why Georgia is an example to us all on clinical trials

This is a piece I spotted in the local press in Wirral about schoolgirl, Georgia Semple, who is a member of the Young People’s Advisory Group for the NIHR Medicines for Children Research Network (MCRN).

The Group helps with the design of clinical research – from conveying their views and concerns to researchers, to writing and designing medical information.

Public involvement naturally varies across the different clinical research networks but I have done quite a bit of work with MCRN over the years, made some good friends, and feel that they are quite a way ahead of others in terms of their thinking.

Involving young people in this sort of activity has many challenges. But Georgia’s story proves it can be done and can be done well. It is an example to others.

Looking forward to my trip down to NETSCC today.

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