Medicines for children research network

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 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.

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.