cancer

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).

First his head came into view, followed soon after by his tail…..

On Boxing Day Cancer Research UK issued figures suggesting that almost 600,000 deaths from cancer between 2007 and 2011 could have been prevented by healthier lifestyles. 

Then, on New Year’s Day, we were told that scientists at John Hopkins in University in the USA had done some work showing that most cancers are down to ‘bad luck.’ 

If you remain baffled by the seemingly contradictory messages contained in these reports and the impenetrable analysis provided by others since, then I urge you to read the NHS Choices article covering this whole issue which was posted on Monday.  It should put you straight…for the time being.

There was something about the way these stories shuffled into view one after the other during the festive season that reminded me of a pantomime horse.

It’s not a bad metaphor. For each represents an important perspective on issues of causation, prevention and risk. Two ends of the same body of work.

Sometimes they will be uncoordinated and ungainly in how they come together. Then there will be other times when they become as one as powerfully as the puppetry in the stage production of War Horse. And when they do I imagine it will change beliefs and behaviours in ways that can only be positive for reducing the numbers of deaths from cancer.

But this Christmas it seemed as if a mixture of poor timing, bad PR and ‘black and white’ media reporting had unmasked and split these schools of thought like Damien Hirst might do, and set them cruelly against one another.

Perhaps like all good pantomimes this episode is no more than an allegory of our times. An essential lesson on how the uncertainty of science does not always play well on a public stage; how quickly and easily basic public health messages about the importance of leading a healthy lifestyle can become obscured and mangled until rendered meaningless.

Then what…..

 

 

It was so humid when I stepped onto the sidewalk it felt like I was treading water. A threat of storms hung in the air, battleship colour clouds steaming slowly across the horizon. Far from here but menacing nonetheless.  An occasional spot of rain found its way on to the floor; a steady hum of a/c units was never far away- contented hives.

Taxis cleared their throats like Uncle Sam on his porch as they lumbered away from the side-walk. An occasional police car whooped its siren to move along a throng of other waiting cars. Porters hovered – there is always someone ready to help you in the US.

I had forgotten what it was like to arrive in an American city in the summer. How every sense is conquered.

Looking up I saw the signs asking us to join American Airlines in supporting the American Cancer Society in its 100th anniversary year. I remembered the interview in the in-flight magazine – between the CEOs of the two organisations.  It had a strong message of hope for cancer patients; particularly the graphic showing the percentage of people surfing cancer compared to 30 years ago. Research was key they said. But at the same time I couldn’t help ruminate how like business major charities and foundations have become in their ‘speak.’

As I sat in the back of the cab, Prince’s 1999 gave way to adverts on the radio. The first called for young male volunteers for a clinical trial being run at the hospital; reimbursement was possible it said. But, in reality, in tone and style it sounded no different to the next which was announcing a bargain sale if sofas. Or the next, advertising places at the local school. The cabbie himself had a small sign on his back seat asking us to support diabetes research? I saw a girl playing in the street and wondered if he had a daughter with diabetes and that’s why he was asking. I should have mentioned it.

Billboards and advertising hoardings buffeted and stretched for mile upon mile like one of their great freight trains. On each Freephone numbers spell out what they will say to you say on the phone. So an injury claims company’s number to call is: 1-800-HURT. I love that.

As the freeway rose on stilts heading into downtown, it curved around the new university hospital complex. ‘Health Sciences Centre’ said the sign on one of the tallest buildings and in letters the size of a small house.

Here’s a country not shy of talking about its science I thought.

I was delighted to see this getting considerable airtime on the radio this morning: the launch of the London Lung Cancer Alliance with its aim of recruiting 3000 lung patients into clinical trials per year.

Lung cancer is on the rise in the UK and it is a difficult condition for which to raise public awareness and funding, not least because of the misconceptions that people often have about the disease.  Stephen Spiro from the British Lung Foundation described it as having a ‘low level of resonance’ with the public in his interview on BBC Radio 4’s Today programme today.

Having spent a short time with a research funder yesterday as they contemplated the future, the London Lung Cancer Alliance is just the sort of medical research model I think is right for the future: collaborative, providing national coverage, clear about its proposition, bold in its ambitions and close to the patient.  The focus on the whole progression of the disease as well as a subject of inquiry is much welcome.

Alan Ashworth, the Chief Executive of the Institute of Cancer Research, London, has written a good blog on the announcement today.  It includes his own family experience with lung cancer.  At last, there seems to be more than a chink of light at the end of the tunnel for lung cancer research and people with the disease.

The results of the annual cancer patient experience survey are out today.

For those of us committed to improving patient access to clinical trials and other research, this year’s report is particularly interesting.  As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed with them.  You can find the results of these particular questions on p57 of the report linked-to above.

The overall finding is that 33% of cancer patients said that taking part in research had been discussed with them but 67% of patients said it had not.  There are considerable variations according to tumour type with urological cancer coming out worst.  By Trusts the percentage of patients who were asked about research ranges from 14% to 62%.  Whatever way you cut it – by tumour type or geographical area – the majority of people who were asked were glad that the subject had been broached.

In a field which has built a significant reputation for improving patient access to research – thanks to the National Cancer Research Institute (NCRI) and the National Cancer Research Network (NCRN) – these figures show the work still to be done to bring research to the fore of the conversation that cancer patients have with their doctor. I would suspect that other conditions have a steeper hill to climb in comparison.

There is no magic bullet to improving access.  The survey highlights the future importance of things like the NHS Choice Framework and the strengthening of patient rights through the NHS constitution in empowering patients to ask the question. But a lot will also rest on ensuring NHS Trusts prioritise the access agend; that they make it their job to raise awareness of their research activity and the importance of patient participation in it.

This week, through NIHR CRN CC, we kicked off a piece of work – Involvement4Access – to bring together patients and support them as leaders within Trusts environment to improve patient access to research.  On Wednesday I had the opportunity to attend a Royal College of Paediatrics and Child Health (RCPCH) workshop about research where parents and young people reported very real differences in the willingness of hospitals to advertise research openly on wards, receptions areas etc.  The reasons put forward by hospitals for not being more open about research are often misconceived if not plain bunkum.

But improving access will also require patient groups and charities to do more to support the patient voice in lobbying Trusts, health professionals and others to change their approach.  There is much in this report and in the recent NIHR league tables of research activity to aid this work.  Yet patients need the right tools and information that they and their families can use confidently in order to broker the conversation with their GP or consultant. They also need to hear more from their representative bodies about how they should consider taking part in research as part of their overall treatment.

At the same time, the survey findings about people who were not asked about research on whether they would like to have been, highlights the fact that to participate or not is a  ‘personal choice’ which must be respected.  53% of people said they would like to have been, 47% said they would not have liked a discussion.  Insight into the patient experience from a research perspective – at what point in their care and treatment should the conversation take place, with whom and how – will increasingly be important.  That’s why today’s survey must be repeated but also used as a prompt for further inquiry.  It should also be repeated in other disease and conditions areas as well.

At the end of the day, providing better patient access to research is about improving patient choice, leadership, insight and voice.

I noticed this in Civil Society from a few hours ago.  Cancer Research UK (CRUK) – the largest publicly funded medical research charity in the UK – is reported to be launching a new identity in September to coincide with the 10th anniversary of its establishment from the merger of Cancer Research Campaign and the Imperial Cancer Research Fund.  The article includes an extensive interview with CRUK’s director of marketing and fundraising, Richard Taylor, as well as a sneak preview of the new logo.  Rather like the change and the thinking behind it I must say.

Interesting paper from the Annals of Oncology and covered in PharmaTimes on how access to clinical trials has led to better outcomes for children with cancer.  The data relates to clinical trial activity promoted by the Children’s Cancer and Leukaemia Group.  A direct quote from the article says:

“Between 1966 and 1970 just 28% of young patients diagnosed with cancer survived for five years, but jumping forward to those diagnosed during 1996-2000, and this figure has rocketed to 77%. Looking at data from more than 25,000 children in the first analysis of population-based survival in relation to open clinical trials, the authors found that the annual reduction in risk of death ranged from 2.7% for rhabdomyosarcoma to 12.0% for gonadal germ cell tumours.”

This also gives me an excuse to mention the Royal College of Paediatrics and Child Health (RCPCH) ‘Turning the Tide’ initiative which is aimed at strengthening child health research activity.  It is launching a report on 20th November 2012 and I’m off to learn more about where this important work has got too, later next month.