Having spent fifteen years before coming to Parliament supporting biomedical research, and now as the first ever Minister for Life Sciences, I know how important medical research charities are to Britain’s status as the world-leader in medical research. 

That’s why I was honoured recently to deliver the keynote speeches at the annual meeting of the AMRC and the Faster Cures Summit. My message was simple: my mission as Minister for Life Sciences is to bring the voice of patients and charities to the top table.

As I set out in my speeches, the UK is a superpower in this field. We spend a billion pounds every year on the National Institute for Health Research (NIHR), alongside the extraordinary £1.2 billion per year raised by medical research charities. This country raises more money from medical research per head than any other nation on Earth, which means we can fund research more strategically and build treatment models with and for patients.

I am also taking the campaign to social media, with my #250 charities Twitter campaign, highlighting the great work of a charity each weekday and explaining how patients can get involved in new medical trials and research.

To follow my campaign, follow me on twitter here.

Watch my speech at the AMRC conference here or read it below:

 

AMRC SPEECH

George Freeman MP

Minister for Life Sciences

 

INTRODUCTION

Lord Sharkey, AMRC guests, thank you very much. It’s a real pleasure to be here.

I really wanted to come today and support what you’re doing. And say something about why I think this landscape is becoming so exciting.

Particularly for charities and the growing role for the medical research charity sector.

And, indeed, for the AMRC as its voice in the new landscape that we’re creating.

But it’s also a chance to applaud the extraordinary work that our medical research charity sector does.

From CRUK which has led in so many areas, right down through the pyramid…

…to some of the really small specialist charities, often working with very part time voluntary staff and no proper admin support.

All doing an extraordinary job in advocating for their patients, raising money, funding research.

To all of you, my central message today is clear.

In this new landscape of increasingly targeted medicines, genomic and informatic technologies transforming the way drugs can be developed…

…I think it’s changing the research landscape too.

Research starts and travels through with patients much more than it used to.

When I came into this sector it worked in silos…

…deep science for tomorrow in academic labs…

…spin outs if you’re lucky…

…funded by pharma, if they were lucky, through a very long development process….

…if everyone was lucky through NICE and NHS England, eventually to the oh so patient, patient waiting at the end for that treatment.

It’s too long for the patients.

It’s too long for industry.

It’s too long for all of us.

And in this new landscape something very exciting becomes possible.

 

THE NEW LANDSCAPE

This new landscape allows us to target innovations much more quickly to the patients. To those who we know, through genomics and biomarkers, will benefit.

It de risks the pathway. But, much more importantly, it puts patients at the heart of the process.

And increasingly what industry want is to be able to work with patients…

…with their tissues, with their data, with their clinicians, with real people, with real diseases, in real time, in real places.

Coming up with drugs that work well in real patients with real diseases means that the patients’ assets go right to the centre stage of the new landscape.

That in turn means that the patient voice will have to go centre stage.

And I think that is challenging in all sorts of ways.

The ethical, regulatory questions are challenging. But no country tackles them better than this country with the values of the NHS and the expertise of the MHRA and NHS England.

That change creates a huge opportunity for patients and for the charities that advocate for them.

And I see the charity sector acknowledging and adapting to that change.

This country by the way raises more money from medical research per head than any other nation on Earth.

We fund research more strategically.

We lead in research, research committees and research guidance.

We advocate on research protocols.

We build treatment models with and for our patients. And we build a community online so that our patients have a stronger voice. And that also supports research using data and the collective use of assets.

I think that is an incredibly exciting opportunity for the charities.

My message today is simple: my mission is to bring some new voices to the top table.

Not just big pharma, though they have a key role to play…

…but also med tech, device, diagnostic, digital and the medical research charities.

I want the AMRC and this sector to come to the top table, and to take a stronger voice in that sector.

 

THE LIFE SCIENCES MISSION

So let me just say something about the mission that you were kind enough to summarise.

It is slightly daunting but I can tell you it completely inspires me every morning and evening.

I consider myself the luckiest minister in Government.

Not just because there’s a lot of good news coming in this sector…

…Jeremy Hunt calls me his ‘Minister for Good News’.

It’s not all good news. And when I sit at night signing letters from industry complaining that we’re too slow to get innovations to patients and that they’re going to leave Britain if we don’t tackle it…

…and then I switch and sign letters from patients and charities that are telling me we’re too slow to get innovation in to patients…

…there is bad news.

And when I sign saying I’m sorry that NHS England haven’t been able to afford this drug, I’m sorry that the process has said no at this point – there is bad news as well.

So I’m driven by both the opportunity and the challenge.

And when the Prime Minister set out our mission in the 2011 Life Science Strategy, there were some very important things in there which drive me on.

We said at the time that we wanted to change the definition of life sciences.

From ‘Bio pharma’, industry and pure academic research, which we’ve supported well…

…to a broader definition of the science of life and science in healthcare.

To unleash a 2nd cylinder. Not just supported in the Department of Business with important ring fence protection for science and the catapult centres, and grants and skills and supporting industry.

But unleashing the power of the NHS as a 2nd cylinder.

Pumping in tissues, genomic leadership, data, access to clinical trials infrastructure and crucially pulling through as a cylinder on the upstroke.

Innovating more quickly into both assessment and into practice and at the heart of it was.

A reminder that at its core the NHS was, is, and should always be, a research organisation.

Look back at the early reports by Beveridge in the war.

The NHS was a more local service, a more patient driven service. It was a more preventative service and it was fundamentally a research service.

And we said in that speech, we want every hospital to be a research hospital.

Every patient to be a research patient…

…by which we mean a more intelligent health system that uses the footprint of diagnostics and the treatment day in day out to support smarter treatment, precision medicine, better diagnostics, and better care.

That is why I’m really privileged to be not just the Minister for the drugs budget and CDF, NICE and MHRA and now all the digital health…

…but also for the NIHR, that billion pounds a year platform for clinical research that underpins the NHS.

A big part of my mission is to bring the research base, clinical practice, NICE, NHS England together and create a space in which we can be more intelligent.

Using that research data not just from clinical trials, not even just from medical research but in a new field of what I’d call ‘Research Medicine’.

Medicine that is intelligent all the time. Gathering data on responses and feeding that back in to more intelligent treatment.

Allowing that to inform 21st Century NICE which has greater flexibility than simply a binary ‘go/no go’ on one quality.

We need to recognise that a range of treatments that are coming are going to need a range of different pathways.

 

THE ROLE OF RESEARCH

I want to say something particularly about the NIHR.

Which I think is a, if not the, jewel in the crown of our life science landscape.

Don’t get me wrong: the NRC £750 million medical research budget and platform infrastructure is crucial.

But in this new landscape of clinical, translational, patient centred medicine, I think that extraordinary legacy of that nationwide platform is absolutely crucial.

And I’m very proud to be the minister for the NIHR and proud that we have managed to continue to fund it.

I was in Massachusetts recently and the Governor proudly told me that he’s the life science governor.

Massachusetts’ whole development strategy is built on life sciences: health and wealth, opportunity, clean, green resilient modern living.

And he told me proudly they’d put a billion dollars into a ten year fund to support life sciences.

I told him we spend a billion pounds every year on the NIHR.

We forget sometimes that we’re a super power in this field. And we should project it and lead appropriately.

So alongside the billion in the NIHR, the medical research charities raise £1.2 billion every year.

That’s a phenomenal achievement. That makes you a major player in this field. And I think we need to treat the medical research sector in that way.

And I pay tribute to Sally Davis and the team at the NIHR for what they’ve done and the consistent drive to develop that infrastructure.

£120 million of industry funding coming in this year. 99% of hospitals now doing research. 752 active studies across the NHS.

We’re trying to drive down the time to recruit patients, an 80% reduction in the time to get permissions.

We’ve now got it down to an average of 20 days. And we’re setting more ambitious targets to drive on and the HRA single approval process.

Gritty stuff. People don’t talk about it down the Dog and Duck. But we know it’s crucial to getting this landscape working.

I want to pay tribute to CRUK as well, who I think have pioneered and led in this field.

I went recently to the opening of the CRUK Medimmune Astra-Zeneca combined laboratory in Cambridge.

That’s a medical research charity not just funding the research, not just rattling the tin and giving money…

…but a combined laboratory. CRUK scientists with big pharma scientists. CRUK on the research committee setting the priorities.

That is a really exciting signal of what’s to come. Of collaboration between charities and industry.

I really want to applaud the joint AMRC, NIHR workshop which is leading on shaping some of the thinking about where we go next.

I’ve agreed and suggested to Sally that next year we should have an NIHR Parliament day to tell the story of their great landscape and in the room.

I’d like to have stands from the charities, bring together a much bigger dialogue about how the NIHR ‘mothership’ supports a lot of research charities.

I suspect that there are opportunities for charities to see what NIHR is already doing. To use their money to compliment and work to get more value out of that extraordinary combination of public and voluntary research.

 

NHS ENGLAND

I want to say something about the role of NHS England in this.

They’ve set out to us very clearly the scale of the transformation, the digitalisation, the care pathway transformation, the integration with care the NHS has got to go through.

It is a stunning and extraordinarily challenging task over the next 5 years.

But one which they and the NHS leadership are up for.

We’ve put the money in and we’re doing everything we can to support them to achieve it.

At the heart of that will be a faster embracing of transformational technologies. Digitalisation, smart devices, smart diagnostics.

Moving away from a paradigm where we tend to diagnose late, treat late and allow the chronic disease burden to fill our hospitals.

We need to get better at diagnosing earlier, treating smarter, preventing.

That again is all about patient empowerment.

And when I went to see the Formula One, telemetry, wireless, smart monitoring technology that we’re pioneering in the paediatric cardiac unit at Birmingham…

…that technology could and should be used to allow patients currently in hospital to be at home with loved ones in their families. Providing 24/7 data feed on a personalised algorithm.

So that the alarm goes in the GP or in the hospital when it needs to go. And that staff aren’t required to waste time monitoring and holding people in hospital who aren’t required to be there.

That again is an opportunity for patient empowerment and for charities to have a role in how that monitoring should work.

NHS England are embracing these transformational technologies, all of which will demand a stronger patient voice.

We’re working on lots of other projects together. I’m not going to run through them all in detail with you.

But I wanted to highlight particularly the importance of research in the Five Year Forward View.

The importance of harnessing the intelligence in the system through the NIHR to drive smarter medicine.

 

GENOMICS

In particular, I wanted to flag the genome project.

When we set it out, I think some people thought it was sort of a Kennedy moon shot.

We’re going to be the first nation on earth to sequence 100 000 full genomes and combine it with phenotypic data and create a database.

It’s a reference library not a lending library.

We’re not going to sell anyone’s genomes.

We’re not going to sell anyone’s patient data. But we’re going to build, and we are building, a secure database.

And we want everyone with an interest in 21st C genomic medicine to come and work with it.

Industry are going to come, and are paying. And we’re going to make sure any revenues we raise, cost recovery and legitimate reimbursement for the cost in that are ring fenced and go into the NHS to support our growth in genomic medicine.

But it’s also a huge resource for charities to use. I want to make sure that charities are able to use it, that the interfaces are appropriate and the protocols too.

Recently Genomics England showed me the first bit of work they’ve done on discovering a new diagnostic and treatment for a rare disease.

It was stunning.

Big computer power thrown at re-mashed, re-hashed DNA identified a particular rare disease. A blindness in children that leads to a much shortened life expectancy.

One of the volunteers on the programme has it and he wants his children not to suffer.

They identified 5 genetic variations and knocked off 4 as not being related. They identified the 5th, realised it was implicated in the existing eye disease pathway for which there’s a drug.

It’s a generic. It costs pennies. It’s on the market and they’ve decided, with patient and clinician consent, to try it.

And guess what? It arrests the onset of the disease.

That’s a stunning, low cost, re purposed, off label medicine used, driven by genomics and computer power.

I think it speaks to the potential for that programme not just to unlock the deep science of new cures and new drugs for tomorrow…

…but to support smarter diagnostics and quicker treatments for rare disease patients, many of whom rely on charities and medical research organisations.

So I think that the genomics project is a phenomenal opportunity for this broader revolution as well.

I wanted to flag 2 other things that NHS England are doing which I think are incredibly powerful and provide opportunities for this sector.

Our Test Bed programme, which Simon Stevens and I have put together to try and unlock the power of intermediate, mid scale organisations in the NHS.

In my view, things really start to happen at scale where you have 1-2 million patients. Where you can get the hospital, GP, CCG, social care, local government leaders around one table.

If they all come from a similar area there’s half a chance their children will be at school together. There’s a sense of place.

And if you’ve got an inspired clinical scientist who controls clinical resource, the beds, the treatment pathway and research, then you can start to really integrate research medicine. And change pathways and use them to attract investment into new treatments.

That creates a huge amount of opportunity for patient voice and charities again.

And that Test Bed programme is about offering 5-10 geographies in the NHS with strong leadership, good digital infrastructure to measure and good opportunities to change particular care pathways in ground breaking combinations of technology.

Companies providing technology, and clinicians and care pathway leaders innovating.

I hope to see a strong voice for charities and patients in that as well.

 

DATA

Underpinning all of that is data.

It is the oil that flows through a modern health service.

I don’t think we’ve been clear enough with people about it…

…about why we need data to flow for individual care, for consistent performance and safety, and for research.

I don’t know about you. But when I clutch my chest and go down, I want the paramedic to come with an iPad, not a pad and a biro.

With my history, my blood group, any allergies, my basic patient record.

I want the frontline clinicians to have it. And when they’ve treated me, for them to hit a button and for it to go straight on my electronic health record.

For my GP to be able to know, the consultant to know. And, when I get to the hospital, for them to know too.

I don’t think it’s complicated. I think just about every other walk of life does it. Patients should expect it. And charities should expect it on behalf of their patients.

For treatments, we need to integrate patient records across primary, secondary and community care.

For research, we all know well the power of deep individual phenotypic data and anonymous cohort data.

To achieve this, we need to tell the story to the public and to patients.

I will do my absolute best. But I’m probably the worst person to go and convince people of the importance of this.

You are the best people: the charities, the not for profit, people who have at their heart the one sole goal…

…which is to improve care for their patients.

The clinicians and the patients themselves are the best people.

So my ask to you is this: please speak loudly and tell people what needs to happen.

If we’re going to really deliver modern healthcare, we can’t run an NHS on cardboard and paper.

 

CONCLUSION

From what we’ve done in the last few years, I hope you can see the commitment from government to this agenda.

it comes right from the top. The Prime Minister personally drives this agenda and gives me huge support.

As does the Chancellor. In a difficult funding round, we’ve ring-fenced the science budget, capital and revenue…

…continuing the catapult centres for precision medicine and self-therapy, ring-fencing the NHS, continuing to fund the NIHR properly.

And to get innovation more quickly into the system.

I will close by saying that I genuinely believe there is a generational change.

A real opportunity for the charity sector to speak.

My door is open. And, for as long as I’m in this office, I hope one of my legacies will be to change that discussion.

So that it’s not just big government and big industry talking about big drugs and big price deals.

But that we have a more flexible faster landscape.

That’s what my Accelerated Access Review is all about.

                                                                                                                                    

It’s not just about big drugs. It’s about digital, diagnostics, devices and it’s about the little, the small.

I’m hoping we build a landscape where you – the charities – will come to me and say:

‘Minister, we’ve got together with our patients. We’ve pooled our data. We have a research portal. We’ve raised money philanthropically. We’ve got a bond with some city financiers, and we’re going to get this going on a not for profit basis. We’ve got an innovation. We want to bring it through your new lit runway, faster for atients benefit.’

If you look at what people like Cure Leukaemia and Charlie Craddock are doing in Birmingham, what they’re doing in Belfast…

…transforming outcomes, bringing money into the local economy, improving the health of their local populations…

…I think we’ve got a really exciting future.

And you are absolutely fundamental to it.

So thank you for all that you do.