Earl Howe

The Department of Health this morning announced the successful NIHR Collaborations for Leadership in Applied Health Research and Care (CLSHRCs).  The formal press release can be found here.

Thirteen CLAHRCs have been awarded over £120M in total following an open competition earlier this year.  The details of the latter can be found here. Further details on the CLAHRCs and the themes they will concentrate on will appear on NIHR’s website soon.  But here is the list of the CLAHRCs by name and links to local press coverage where I have found it.

Worth reiterating that, as with all NIHR funded schemes, each CLAHRC has a strategy and plan for promoting and advancing public involvement in their work.  But, interesting, 6 of them also have a research theme focusing on public involvement/engagement/experience: NW London; South London; East; Wessex; North West Coast; Oxford.

Congratulations to them all.

NIHR CLAHRC   North West London
NIHR   CLAHRC  East Midlands
NIHR CLAHRC Yorkshire & Humber
NIHR   CLAHRC  West Midlands
NIHR   CLAHRC  South London
NIHR CLAHRC   Greater Manchester
NIHR CLAHRC   East
NIHR CLAHRC   South West Peninsula
NIHR CLAHRC   Wessex
NIHR CLAHRC   West
NIHR CLAHRC   North West Coast
NIHR CLAHRC   London: City, North & East

NIHR CLAHRC  Oxford

NIHR Journals Library Launch 20th June 2013

As promised here’s my speaking notes from the launch of the NIHR Journals Library today.  Good to see the Minister, Earl Howe, there (I tweeted his remarks earlier) plus the CMO, Professor Dame Sally Davies, Trish Edwards, Asst Editor from the BMJ etc.,

  • Public involvement in UK health research
  • NIHR wedded to public involvement as a core principle from the beginning
  • Six years have shaped and defined some common-sense models for involving the public
  • Have avoided something that could have been a ‘smothering cloak of acceptability’ instead are close to achieving a ‘partnership focused on improving value and quality.’ But lots still to do.
  • Quite literally thousands of patients, carers and others are joined in this endeavour with us (like Leicester yesterday!)
  • International leadership – lots of traffic with other countries about public involvement and sense that our developing partnership with the public might just be giving us an edge
  • NIHR Journals Library approach is a continuation of this agenda

What the NIHR Journals Library means for patients and the public

Open publication of the complete results….

  • Aside from demonstrating how public money has been spent and with what impact, a number key benefits, including one that you might not have thought of on your way here…..
    • Help patients, carers and relatives understand research, indeed the research underpinning care and treatment
    • We know people are increasingly looking for such information and trying to make sense of the mass of info already out there
    • Inform policy-makers and clinicians and support adoption of new and better treatments

Also about helping researchers and patients to better understand how different models of public involvement in research do or do not add value to…

  • Building the evidence base around methodology for public involvement
  • Important for other journals to begin to follow approach of NIHR Journals Library
  • Enabling sharing of knowledge and understanding

The NIHR Journals Library commitment to public involvement

  • A plain English summary will accompany all research published in the library
  • Authors will be asked to describe patient and public involvement in their study
  • Ref INVOLVE work to produce a standard approach to lay summaries across NIHR

From willing to informed research citizen

For selected projects we will also produce stand alone summaries intended for a public audience

One of tasks going forward it to embed public involvement in how the above pieces are produced.

This is just the beginning so watch this space….

 

 

 

 

Dear Member of Parliament,

This afternoon the Health and Social Care Bill will recieve its Second Reading in the House of Commons.  The legislation sets out a far-reaching programme for reforming the NHS and the provision of patient care. 

The Association of Medical Research Charities (AMRC) and its 127 member charities believe that high quality research is one of the markers of a modern health service and crucial to improving outcomes for patients.  Last year medical research charities, working collaboratively with the National Institute for Health Research (NIHR), other funders, academics and patients, funded 37% of all clinical trials and other studies on the NIHR portfolio.  The NHS is crucial to the delivery of this research and is one of the reasons why the UK is an international leader in science.

At AMRC’s AGM in November 2010 the Parliamentary Under Secretary-of-State for Quality, Earl Howe, said:

‘We are committed to a future in which research continues as a core function of the NHS. This commitment is written down in the White Paper, where everyone can see it.’

We welcome the fact that the Health and Social Care Bill places a duty on the new NHS Commissioning Board to promote research and innovation and its focus on quality outcomes for patients.  But as the legislation begins its passage through parliament further clarity is needed on how research and innovation will be supported and incentivised in a radically changed NHS.

We ask that you support AMRC and its members in raising the following issues (see also our response to the NHS White Paper) with Ministers as the debate on the Bill opens:

The legislation and the changes it presages are an excellent opportunity to engender a research active culture within the NHS.  We call on the Government to implement the recommendations of the Academy of Medical Sciences’ report ‘A new pathway for the regulation and governance of health research’ aimed at embedding research as a core function of the NHS.  These include developing research activity metrics for research as part of the NHS Operating Framework, and ensuring every Trust Board has an executive director as a member who is responsible for promoting research within the organisation.

AMRC believes there are inherent risks to future research activity such as clinical trials with the advent of GP Commissioning Consortia.  Currently, many patients who wish to find out about those clinical trials in which they can participate and whose GP practice is not research active, have to rely on charities and other sources of help.  Unless GPs are supported appropriately, and incentivised through the new tarriff system, time and cost pressures will act as a further disincentive to their involvement; this despite the evidence that trial participation can lead to better outcomes for their patients. 

Finally, it is important that the Government moves swiftly to implement the aforementioned Academy’s other recommendations for reforming the regulation of health research for the benefit of patients and researchers.   These include the establishment of a single regulator, the Health Research Agency (HRA), and embedded National Research and Governance Service (NRGS) to ensure timely and streamlined approval of clinical trials and other studies.  The Health and Social Care Bill will have important implications for how the HRA might operate in practice not least in setting out the roles and functions of other regulators.

As you may be aware, the Coalition Government committed to a strong and sustained budget for health research in the Spending Review.  We welcomed that decision.  We hope that you will now support AMRC and its members in urging Ministers to ensure that the potential of this funding is  realised for patients by ensuring that the NHS is fit for research now and in the future

Yours faithfully,

Simon Denegri, Chief Executive

 I thought you may be interested in this extract from the Health Minister, Earl Howe’s, speech to out AGM on Wednesday:

It also gives me pleasure to note [that] AMRC member expenditure on research having exceeded £1 billion for the year for the first time. Given the economic circumstances, I think this is something about which you should all feel immensely proud.

 Research history

 Indeed, that feeling of pride should be shared by everyone involved in medical research.

 Since the NHS was established in 1948, research has brought incalculable benefits for patients. Treatments have been improved. Inequalities have been reduced. Productivity has been increased.

 The contribution made by medical research charities in facilitating these benefits has been, and continues to be, enormous.  The lives of people with wide-ranging needs – those with mental illness, long-term conditions, dementia – change because of the work done by the organisations represented in this room.

The coalition greatly values the efforts and dedication of all involved: from those who raise money through sponsored activities, to those who plan and implement strategy. For that to still be happening during a time of economic uncertainty is truly heartwarming.

Together with funders and donors in the public and private sectors, research charities have helped place this nation at the forefront of medical research.  Currently, the UK ranks second to the USA in share of world citations to clinical papers.

And it is our job to support the research community in its efforts.

In 1991, four years after the AMRC was established, it was a Conservative government that set up the NHS Research and Development programme.  I was but a humble transport whip back then.

Now, nineteen years later, the commitment of the coalition government to health research has been emphasised both in the Strategic Spending Review and in our White Paper, “Equity and Excellence: Liberating the NHS”.

It’s on record. It’s there for everyone to see. Because we know how central research is to every aspect of the NHS.

Future direction

 But of course, commitment is nothing without actual progress. So what can you, the people in this room, expect to see from us? How will we enable the research community to keep on innovating?

To start off, the coalition will demonstrate its dedication by increasing spending on health research in real terms over the next four years. 

Some may question the wisdom of this increase, given funds are so tight. But to them I say – this is precisely the time where innovation, investigation and invention becomes most valuable.

Research saves money. I get the impression I may be preaching to the converted, eulogising medical research with the Association of Medical Research Charities. But it’s true. It allows us to identify new ways of preventing, diagnosing and treating disease. It is essential if we are to increase the quality and productivity of the NHS, which are, after all, the best ways of making efficiency savings.

From the extra funding, we will provide support to the National Institute for Health Research so it can play a full role in pulling basic scientific advances into tangible benefits for patients and the economy. 

We are also providing £220 million of capital funding for the UK Centre for Medical Research and Innovation. I attended the signing ceremony the other day and am tremendously excited about the venture.  The Centre is due to open in 2015. It will help drive forward the prevention treatment of disease by researching biology, developing technologies and engaging with the public.

The Department for Business, Innovation and Skills will ensure that Medical Research Council expenditure is maintained in real terms, ensuring total health research funding will increase across all sectors.

And through the intrinsic bond between the NHS and universities, the National Institute for Health Research – NIHR – is turning laboratory-based discoveries into cutting-edge treatments that make a real difference to people’s lives. Through the internationally-recognised Biomedical Research Centres and Units, the NIHR is helping translate pure research into practical success.

That is something particularly relevant to us here today. I know that 37% of all studies supported through the NIHR Clinical Research Network are funded by AMRC members. I applaud your input in this work.

Earlier this year I visited one of these Units at Moorfield Eye Hospital. The quality and inventiveness of the work I saw was quite staggering. Amongst other things, I was shown the projects currently being developed by NIHR-supported teams on glaucoma. They were developing ways to identify glaucoma sooner, treat it better and research it more thoroughly than ever before.

This work is invaluable. So the White Paper explicitly states that we will continue to promote the role of Biomedical Research Centres and Units, Academic Health Science Centres and Collaborations for Leadership in Applied Health Research and Care, to develop research and turn it into improvements in education and patient care.

Innovation pathway

Of course, for this to happen, there need to be efficient ways for innovations to reach the patients that need them. This must be across the NHS.  

That is the difference, I think, between invention and innovation – successful application.

It is crucial that best practice, innovative ways of working and new technologies are not only identified and adopted locally, but are shared and spread across the NHS.  Our challenge – both mine and yours – is to achieve the systematic adoption and diffusion of innovation at pace and scale. To make the NHS a true champion of innovation.

This means we must not only enable innovation, but also encourage a climate in which adoption of innovation is welcomed. In which people believe innovation will improve their lives and their work.

My department will be focusing on greater decentralisation, greater responsibility for GPs and patients and a Big Society. This will help create incentives to encourage the systematic adoption of innovation, empowering patients and society by putting them in control. It will create a ‘pull’ – a demand – for new ideas and technologies as well as ‘push’ – a supply.

We want to encourage the uptake of new medicines. So we have developed new national metrics and more are in the pipeline. These metrics will show clinicians what their international peers are prescribing.

And we will reform the payments and incentives system, concentrating more on outcomes. This will not be easy. Value is not easily defined. But we will work with patients, and we will work with clinicians, and we will work with industry and charities, to define what the incentives will be. 

The fact is, innovation is booming.

Regional Innovation Funds generated nearly 2,000 applications this year, with productivity measurements suggesting projects achieving returns on investments of between 60 and 2600%.

A recent independent study from the Kings Fund and Innovation Unit reported that innovation now seen as ‘core business’ for the NHS, specifically at board level.

And of course there are the Expos. Expo 2009 was a great success and Expo 2011 in March will be even bigger and better.

Regulation

And yet there is still more we can do.

Recently, the UK has gained something of an unwanted reputation as the regulatory capital of the world. A reputation for complexity. For inconsistency. For convolution.

It is unacceptable to me and to the coalition that research in this country could be hindered by form-filling and box-ticking.

We have asked the Academy of Medical Sciences to conduct an independent review of the regulation and governance of medical research.  It will report soon. 

When it does, we will look at the legislation and bureaucracy that affects medical research and radically simplify it.  To allow you, the researchers, the freedom from paperwork that will best support our shared goals.

We are considering a national research regulator and expect the Academy’s working group to make detailed recommendations about that.

We also want to reduce the regulatory burden that charities face when they engage in research.  The National Research Ethics Service and the National Institute for Health Research have already made some headway in harmonising different processes.  I want to thank them what they have done.

Conclusion

This Government values the input of charities in medical research. It creates jobs, it shares knowledge and it ensures patients receive access to the highest-quality treatment, preventative care and outcomes.

We are committed to a future in which research continues as a core function of the NHS. This commitment is written down in the White Paper, where everyone can see it.

My department already works closely with your organisations. I look forward to that relationship continuing and developing to achieve what is our joint aim – to have health outcomes as good as any in the world.

Thank you.

I have just returned from the Financial Times’ offices, where I was the guest for their regular science podcast hosted by Clive Cookson and Andrew Jack (it will appear here later today).  The theme of the discussion was ‘Selling Sickness.’  Andrew was reporting on a recent conference of the same name that took place last month in Holland.  The programme and presentations from the conference can be found here and they made interesting reading as I was prepping last night.

For those who don’t know, ‘Selling Sickness’ is a term used to describe the way in which the pharmaceutical industry and other companies are said to collude with medicine and science to create markets for new and existing products.  The claim is that they do this either by exaggerating the existence of a condition, fashioning a disease out of what one might call the ‘unbearable ordinariness of being,’ or playing on the anxieties of both the worried well and unwell.  Sometimes all three of course, as I am sure many of us have witnessed.

It is a contentious issue and the discussion this morning was interesting.  That companies should be able to hop, skip and jump through the established routes of defining disease in order to market and sell products should be a concern to us all.

From a patient and medical research charity perspective the worry is more specific.  It is that such antics lead the genuinely-ill down the wrong road with regard to treatment, while encouraging the genuinely-well to believe the worst and follow a path that means taking unnecessary risks with their health.  Only through a combination of greater openness, better regulation and also patient champions working with and within companies can we perhaps avoid the worst vestiges of this.

But it also says something about deep trends and changes in our culture and society.  One in which the expectation is set that we must all carry some vestige of ill-health or impending sickness if we are to be ‘complete,’ to be able to exercise choice in its fullest sense in a world increasingly run on fear and neurosis.

The irony of course is that, as individuals, we are not good at taking medicine which is right for us.  Also, that people are generally lacking in the support needed to alter their treatment regime if and when their condition changes.  The challenge is not so much medicines wastage but how to ensure more effective use of existing medicines.  That certainly seems to be the evidence published toay by the York Health Economics Consortium and The School of Pharmacy, UCL.  

This study shows that waste from primary care prescriptions amounts to about £300 million a year.  As the authors point out, in the context of an £8 billion drugs bill in the UK, that’s not bad. Indeed, the report is at pains to say that the NHS is quite robust at tackling waste i.e the stuff that is thrown away.  The real issue, it says, is ensuring more effective use of medicine:

‘The new research finds that up to £500 million of extra value could be generated in just five therapeutic areas (asthma, diabetes, raised blood pressure, vascular disease and the care of people with schizophrenia) if medicines were used in an optimal manner,’ it says.

Pharma Times is reporting today that Earl Howe (who is speaking at our AGM tomorrow) last week backed the idea of a new medicines service attached to pharmacies to help improve medicines adherence when he spoke at the Pharmaceutical Services Negotiating Committee annual dinner (I miss all the best gigs in town).

Moving swiftly on, the research by the York and London teams could not be more timely.  For the last six months I have been involved in a fascinating piece of work stemming from the Royal College of Physicians report last year: ‘Innovating for health: Patients, physicians, the pharmaceutical industry and the NHS.’   Following its report, the College established a ‘Medicines Forum’ which was charged with looking at how the report’s recommendations could be taken forward.  This was to be done with the help of some sub-groups focusing on specific streams of work.

I am on what is called the patient sub-group – chaired by Harry Cayton and composed of patient representatives, pharmacists, GPs, regulators and others including Professor David Taylor from the School of Pharmacy at UCL.  We have chosen to focus on two issues: medicines concordance and; public involvement in research.  We are nearing the end of a series of enrgossing evidence sessions with a wide variety of people and organisations – from Boots the Chemist to the Royal College of Pharmacists, from the Science Media Centre to some of my members such as the Motor Neurone Disease (MND) Association – and will report to the College shortly ahead of a conference it is doing in February.

I feel that we are arriving at a good diagnosis of why people don’t take their medicines (it is as much to do with the quality of interaction with a health professional as with the quality of information).  We are now turning our minds to some solutions and recommendations.  I am sure that the need for more investigation and research into this issue will be one of them, and I hope that my members will take up the challenge as I know some already have.

But it has also highlighted for me that,  in the endless discussions about translational gaps in getting science from the bench to the bedside, we have spent far too little energy in the UK exploring how to ensure that it gets from the bedside to the, well, patient’s inside?  A simple process one would have thought.  But many influences can determine whether it happens fully, partially or not at all; I have already mentioned just two.  In the drive to create and develop medicines that meet real need, we must not forget the need to pay greater attention to this final, translational gap. 

That’s a long way from selling sickness I know.  But much more in the public interest, wouldn’t you say?