Cancer Research UK

I am often asked whether it is difficult – if not impossible – to involve the public in laboratory based research where researchers have limited or no direct contact with patients and the public.

My answer is that it might be difficult but it can be done. And the benefits can be significant.  The real challenges are to be clear about the purpose of this involvement, to identify where it can make a difference, and to identify the right methods for making it work in practice.

Earlier this year I sat on an EU funding panel in the neurosciences.  We looked at a wide variety of applications – from public health to basic science in a laboratory.  It was striking to me that the basic scientists  often put together more exciting and imaginative public involvement plans than their colleagues in other fields who should’ve known better. It was as if they were rising to the challenge; they wanted to prove those wrong who say that the lab is no place for the public.

I seem to recall that, for some years, the MS Society ran a buddy scheme in which MS sufferers were teamed-up with lab-based researchers. The partnership they developed over time became a motivational force for the researchers who had often never met a person with MS before. Equally the people with MS felt empowered by the knowledge and understanding they gained. They became impressive ambassadors for the charity’s research work.

I am delighted to say that a little known but very important group in the world of public involvement – the ‘User Involvement in Voluntary Organisations – Shared Learning Group’ (which brings together charities and voluntary organisation pioneering public involvement work) – has published a short but rather brilliant discussion paper looking at ways in which patients and the public can be involved in lab-based research.

You can find the paper here (see link entitled ‘Involving people in laboratory-based research). It includes examples from the Alzheimer’s Society, Cancer Research UK and Parkinson’s UK, some really helpful guidelines to aide your thinking as well as links to further reading.

I highly recommend it.

Harpal Kumar, the Chief Executive of Cancer Research UK, yesterday posted a blog about the new task force he is leading for NHS England on cancer diagnosis.  The aim of the task force is to enable people to get an earlier and speedier diagnosis of their tumour in the future.  But it will also be looking at treatment and after care. The initiative is badly needed and it is encouraging that it has such a strong focus on piloting ideas rather than simply cogitating what ‘might be.’

Many of the Sunday newspapers picked up on the specific proposal to allow patients to self-refer themselves to specialists for diagnostic tests.  If you believe in patients taking greater control over how their health needs are met, then this sort of direct referral is the logical next step.

Who knows what it means for GPs though?  I think many patients empathise with their GP about workload and the pressures of the job.  But I am sure they are less than enamoured, as I am, by the way the profession presents itself.  One of the unwritten stories for 2014 is how the GP profession has successfully rebranded itself as the real victims of health service reform.  And there was I thinking it is service users!

I suspect I will be told that my view is just one person’s perspective or experience (and, yes, my family did have a less than brilliant experience of primary care this Christmas) and doesn’t reflect the ‘truth.’  However, I seem to remember the Kremlin saying this about its critics before the Berlin Wall came down.

The interesting thing about the issue of self-referral is that it also came out as a very strong signal in the public feedback about the UK Clinical Trials Gateway in 2012.  In the survey NIHR conducted, approximately two thirds of people said they would prefer to be given the option of going straight to a clinical trial unit to discuss the possibility of participating in a clinical trial rather than being referred back to their GP by UKCTG.  Why?  Well, again, it is this perception that their GP is the ‘middle man’ blocking their path – rather than being a gatekeeper – to trying new treatments.

Since then, there continues to be an increase in the number of research active GP practices thanks to some sterling work by the NIHR Clinical Research Networks.  But perhaps direct referral should be the way forward for research to increase patient choice and participation.  If this capability can not be built around our clinical trial units across the country, perhaps it is something that our Academic Health Science Networks (AHSNs) might think about supporting – a service in each region that patients could refer themselves too and take the strain off GPs and other serices.

Cancer might well be a good test bed for this and something the task force should consider.  One in three cancer patients have a discussion with their doctor about research with many of these going on to take part in research as a result (National Cancer Patient Experience Survey 2012-2014).

Today sees the annual Cancer Patient Experience Survey published.

For the third year running it looks at the extent to which people with cancer are being told about the opportunity to take part in research. Also, how many take up that opportunity. National data is published and then statistics are provided by NHS Trust and tumour type.

The results are not that encouraging. Since the survey started including questions about research, the dial has been stuck at less than 1 in 3 people having that possibly life-saving conversation with their doctor. If anything there is a slight trend downwards  In 2012 it was 33%, inn 2013 it was 32% and 2014, 31% (see pages 61 onwards of the report).  If you have brain or haematological cancer the figure is 37%. If you have skin or urological cancer it’s 17% and 14% respectively.

I am sure some people would say the drift downward is a statistically insignificant drop. But consider this.

For arguments sake, say cancer research is a business. And say patients with cancer are its customers. Then in business terminology we would be informing the stock market that sales are flat, the growth forecast is poor, and there may be a case for issuing a profits warning. And we all know what has happened to even our biggest companies like Tesco when this happens.

What are the causes for this lack of ‘growth’ in the numbers of people with cancer being offered the opportunity to be part of a clinical trial? Why is this happening in a clinical area which had had the longest run-up at promoting research to patients?

I don’t know for sure, is the answer. But I hope that it is an agenda item at the next board meeting of the National Cancer Research Institute (NCRI). Finding out why and putting in measures for improvement will be important.
Arguably, for instance, the cancer patient experience survey should be one of its performance measures. Personally I would like to see us aim for results nearer 50% and 80% by 2016 and 2019 respectively. Arbitrary perhaps but we need to be aiming for something.

I do have an opinion as to what’s not happening. It may be wrong. Nor is it likely to be the whole picture. But it’s based on conversations with public involvement colleagues in cancer and others around the country over recent months.

I think our consumer groups in cancer are not being listened to as much as they should be. I think ‘change’ may be drawing them away from the business at hand. I think that they are not being given the funding and support necessary to be what they can be – an important part of the ‘sales force’ that delivers on the NHS Constitution pledge that every patient has a right to information about research. Finally, I think we are failing to engage their colleagues in the NHS workforce sufficiently in this agenda. But that goes for all conditions.

If I were invited to that next NCRI Board Meeting I would be encouraging them to look at NIHR’s strategic framework for increasing participation in research ‘Promoting a research active nation.’ It doesn’t hold all the answers. However, I would be suggesting they look at how to translate its clear and considered approach – from the research ambassadors programme to the ‘OK to ask’ campaign – to cancer. And then to back it strongly.

There are some reasons to be optimistic. The members of the NCRI Consumer Liaison Group are a formidable force and well-led. Our cancer researchers and clinicians are committed. Cancer Research UK now has a public engagement strategy, budget and team in place and will be putting more weight behind this agenda in the next 12 months. Let’s hope other cancer charities follow suit.

For this results is not good enough for people with cancer and their families.

Today the All-Party Parliamentary Group for Medical Research holds its summer reception in parliament. This annual event has become an important fixture on the health research calendar. The ‘great and the good’ assemble to focus on a key issue of the day and to network. At some point in proceedings they will be addressed by the Science Minister, David Willetts MP, or Health Minister, Earl Howe, or both.

This year’s event is headlined ‘healthy futures’ and aims to bring to light how investment in research has long-term economic and social benefits. This is all with an eye on the forthcoming General Election next May and a subsequent Comprehensive Spending Review (CSR).

In recent years, research funders have sought to understand better the impacts arising from the money they spend on research. Often this impact has been expressed qualitatively. But is has proved more difficult to place a financial value on impact. The first report to do so was published in 2008 when I was the Chief Executive of the Association of Medical Research Charities (AMRC).

The report looked at the economic returns arising from government and charity funding of cardiovascular research, also testing the methodology to a more limited extent on mental health research. The study, undertaken by the Health Economics Research Group at Brunel University, RAND Europe, and the Office of Health Economics, found that for every £1 invested by the government and charities in cardiovascular research, a total annual return of 39p was generated each year in perpetuity. The figure for mental health research was 37p per £.

Now the study – commissioned by Cancer Research UK, Wellcome Trust, the Academy of Medical Sciences and the Department of Health – has been repeated in cancer and published as a paper in BMC Medicine to coincide with the All-Party Parliamentary Group on Medical Research reception. You can read the paper here:

The key findings in the study which are also published in report form as ‘Medical research: what it’s worth,’ are as follows:

The British public has funded £15b of cancer research over the 40 years to 2009 through taxes and charitable donations.

The time lag between investment in cancer research and it’s eventual impact to patients is around 15 years. This is similar to the figure obtained in the earlier study, and shows the long term nature of the payback from research funding.

Key cancer treatments and interventions have delivered the equivalent of £124b og health gains for UK patients in the 20 years up to the end of 2010.

The proportion of these benefits attributable to UK research was 17%.

Taking the spend, and allowing for the time lag and the proportion of benefits attributable to UK research, each £ invested in
cancer-related research by the UK taxpayer and charities generates returns of around 40p in every following year. Of this, 30p is the estimated benefit from research to the wider economy; the direct health benefits amount to 10p per annum for every £ spent. The overall annual rate of return is estimated to be 40%.

I am sure the study will be challenged by some and so it should.,Only through ever-greater scrutiny are we going to improve these
socio-economic models about research. But they seem of enormous value to me in trying to quantify the impact of money spent today, on society tomorrow. And if it makes policy-makers and newly-minted Ministers put their red pen away then all power to its elbow.

It has been an interesting 24 hours for some of our goliaths of research funding.

Starting with the positive, Cancer Research UK (CRUK) rolled out its new research strategy this morning: ‘Beating Cancer Sooner.’ Its bold new vision is to see 75% of people surviving the disease in the next twenty years. That’s compared to the 50% who survive today.

And it’s aiming to inject a good deal of new cash raised from the public to achieve its ambitions. Over the next five years it wants to double the amount it raises from supporters. Without checking the figures, I would have thought that this would put it well on course to being the first public fundraising charity investing around £1 billion on behalf of its beneficiaries.

I like the commitment in the strategy to use this money to support young scientists and the focus on rarer cancers and young people with cancer.

There is only one sentence in the strategy directly about public involvement as far as I can see. In this it talks about wishing to increase the opportunities for patients and carers to be involved in research – the charity has long been criticised that it does not do enough on this front.  But it has recently advertised for its first ever ‘Director for Public Engagement’ and has been consulting others on where it can make the most difference in this field.

So watch this space would be my counsel. The thing to remember about organisations as big as CRUK, is that they can take a long time to turn round. But when they do, their might can be considerable in changing the wider culture and environment. So who know, in five years time we might all find ourselves running to keep up with them.

Contrast Cancer Research UK’s move with that of the US pharmaceutical company, Pfizer, which has just announced a takeover bid for Astra Zeneca headquartered in the UK. The Guardian’s Ian Sample has written an excellent piece today about what it could mean for UK research.

The more you look at it the more it seems like the defensive act of an industry that has run out of ideas about how to face the future. Pfizer’s predatory antics only make that future dimmer in my opinion. Unless you are a shareholder.

My brief experience of mergers and acquisitions suggests that the subsequent story is rarely a happy one for the company taken over and its people. In fact, I would be interested to see the evidence supporting the notion that innovation burns brighter in the amalgamated concern. Or maybe it does but, like magnesium set alight in the school chemistry lab, briefly and destructively.

There is also a rather curious public involvement angle to all this in that Pfizer and Astra Zeneca are strange bedfellows when it comes to culture. I have been impressed by Astra Zeneca’s open embrace of public involvement and engagement in recent years. Pfizer’s is somewhat behind the curve to put it mildly. It would be a loss to us all if Astra Zeneca’s leadership in forging a better relationship between patients and industry is swallowed away. We shall have to wait and see.

I am afraid there is no getting away from the fact that what differentiates the pharmaceutical industry from public and charity funders of research is that pharma are under no real obligation to act in the public interest.

So we should not be surprised when they act against it.

I hope you have had a good Easter weekend.

There have been three health research stories in the last week that have caught my attention.  Each story is significant in its own right.  But they also share a common theme around the importance of public participation in research.

First up is the research published by King’s College London in the American Journal of Psychiatry looking at the long-term effects of childhood bullying,  It uses data from the British National Child Development Study  funded by the Economic and Social Research Council (ESRC) to show that the detrimental effects of bullying last well into middle age.  The participants in the study are 17000+ individuals who were born in one week in 1958 and have been followed over time.

I noted that someone posted a comment on a news site saying ‘why the research, isn’t it obvious?’  Maybe.

But as someone whose adult life has been coloured by what happened all those years ago at secondary school, I am delighted that they have opened up the discussion about this important issue using such strong evidence.  Also, to see so many voices comment on the need to step up preventative work in our schools, communities and online.

It proves the importance of this sort of birth cohort study to understanding more about health and well-being and how it changes over the decades.  The point yet to prove in this case is how to turn such evidence into practical interventions.  Anyway, call it bias, but I happen to think it deserves billing over my next chosen story.

This is the news that Cancer Research UK, Astra Zeneca, Pfizer are moving to the next phase of their Stratified Medicines Programme started in 2011 which involves screening all lung cancer patients for genetic markers to determine which of as many as 14 different new drugs might help. It’s called the National Lung Matrix Trial in what sounds like a Hollywood blockbuster.

This is far-removed from how pharma companies used to work; searching for blockbuster drugs in the manner of someone looking for the Holy Grail.  The partners are looking to test sharper, more precise instruments.  The trials are more complex and often involve fewer participants.  The collaboration is wider and more collegiate.  Where it has a point to prove is in the extent to which the NHS is fit-for-purpose to make this sort of trial work not just in cancer but in other diseases too.

That’s also the point of the third story I wanted to highlight.  Every year, ahead of its annual dinner, the Association of British Pharmaceutical Industries (ABPI) publishes some sort of (frankly unreadable) report about what it believes is the dismal state of UK research.  To be fair, its report this year – ‘Mind the Gap’ – about the state of readiness in the UK to develop ‘personalised medicines’ is a bit more interesting and balanced than usual.

But why do I sense some sort of whispered, almost pitying voice reading the words when it comes to the sections noting the on-going difficulties in recruiting people to clinical trials.  But also the complete absence of thought or consideration to patients and the public as possible partners in devising solutions, not least by involving them in research design and delivery.  As had been shown time and again across our clinical research networks.  It’s the perennial blind-spot for industry.

They have much still to prove.