Brexit – how to damage science and healthcare

Brexit seems to dominate everything at the moment and the personality cult of Theresa May is also being thrust down our throats in a strong and stable manner.

Last week I was in Brussels for the EORTC Quality of Life conference, the first it has held for about four years. The question of how Brexit will affect EORTC was raised and quickly answered by Denis Lacombe, the EORTC Director-General. It won’t affect it at all because EORTC is not an EU institution. EORTC is a Belgian charity with a wide range of funding sources, including Cancer Research UK, and its Board has stated clearly that its partnerships will be unaffected.

It raises the same question about other cancer research initiatives, some of which have long term EU funding and involve UK universities and research centres. Their fate will be down to the much anticipated negotiations which, like the previous longest running speculation in history, the Spanish Armada, is being talked up by a right wing media heavily biased towards disaster. The threat is very real. We have EuroEwing and EuroSarc as two sarcoma research projects funded by the European Commission and with a wide partnership. EuroEwing is led by University College London, Oxford University is a prominent participant in EuroSarc. There are many other medical research initiatives funded similarly. What will their fates be?

On the wider subject of scientific research I cannot see any way that Brexit will not be damaging. Unlike the Spanish Armada, which failed to invade, the EU will withdraw to cause significant damage. Mitigating the likely damage and finding ways of ensuring that top quality young scientists will continue to want to pursue their careers in the UK is critical.

Drug regulation is another area. The UK must continue to be a partner in the European Medicines Agency (EMA). Running a parallel approvals process just for the UK would be incredibly costly, we don’t have the skills in the right numbers to handle it, delays would be inevitable, the quality would diminish, and patients would be denied new treatments even when they have been shown to be safe, beneficial and cost effective.

Failing to recognise such hard realities seems to be part of the gaming which is going on.

Sad to hear Nick Clegg on Radio 4 explaining the approach he thought should have been adopted. The so-called soft-Brexit would have aimed to draw European leaders into identifying and discussing areas of mutual benefit early on, with the tougher discussions about trade and migration being drawn out during an established context of working together for mutual benefit. So sensible, so sad that opportunity was not taken.

My final thought is that the 27% of the population who voted to leave the EU would not have voted for poorer healthcare. They didn’t of course – they voted for a brazen lie, £350m a week going into the NHS.

Shall we ever live this down?

In the meantime I enjoy working with EORTC and my presentations at the EORTC QoL Conference are on-line.

Pathway to Patient Benefit 

Survival – diagnosis or lifestyle 

Precision medicine – promotion is an ethical challenge

Precision medicine is the carefully chosen term for what has been called ‘personalised medicine’. It is more appropriate but it still hides a range of issues affecting cancer patients which the promoters are not keen to discuss. When my eye was caught by the headline Cancer Care is Rapidly Changing — Here’s How You Can Keep Up it was no surprise to find precision medicine over promoted as usual.

The story describes the launch this week of Precision Medicine for Me which claims to take a new slant on the subject. It is a collaboration of more than a dozen patient organizations, patient advocates, startups, and industry leaders with the admirable objective to inspire and help patients understand and navigate the potential of new tumor testing, and raise awareness of the latest treatments and trials.

They discuss the challenge of getting tumours tested for genetic mutations, the fact that few centres which treat cancer have the capability yet, and the fact that it is costly. They skate around the fact that drugs may not be available to treat mutations which have been identified, drugs which might work may not be approved or funded for certain cancers, and that clinical trials of unproven treatments may be the only route open to a patient. It is a US initiative and the collaborators have a cancer background. One patient is named who has benefited from the approach.

Precision medicine is an important development, however it has a long term view even though it may benefit a select (and growing) group of patients in the meantime. Precision Medicine for Me is focussed on lung cancer, five of the collaborators are lung cancer specific. It is a matter of great regret that their story failed to focus on that specific point and made a promise to all cancer patients which cannot be met.

To illustrate the issues it may be useful to recall that one specific sarcoma benefited from one of the very first ‘precision’ drugs. Imatinib for GIST was first studied back in 2000 and was the fastest drug to achieve a licence when it was approved in the US and Europe. The rise of secondary mutations resistant to imatinib, commonly after about two years, has been followed by further drugs to treat them, or some of them. We now have strategies designed to delay resistance to imatinib. Mutation analysis has identified more than 40 secondary mutations. We have many patients alive after well over a decade of treatment, and all that is truly welcome. We also have patients who have died because the secondary mutations they faced are untreatable. Hopes we might have had for rapid development of similar treatments for other sarcomas have been dashed long ago.

This is a tough reality.

The truth is that at present more cancer mutations are being found each year than there are drugs to treat them. The FDA in 2016 licensed treatments for 11 cancer indications – 2 were extensions of an existing licensed drug, 2 were for side-effects – a total of 7 new cancer therapies (by the way one was for sarcoma). EMA’s activity was similar. This is a recipe for frustration – science can find the mutations but drug development cannot deliver the treatments anywhere near fast enough.

So beware promoting precision medicine. The danger of raising expectations in people desperate for treatment makes it unjustifiable. The ethics of unbalanced promotion are questionable, the science should be discussed but even the vaguest promises should be avoided. Ideally only specific clinical situations should be reported. The GIST story should be remembered and if it is replicated in other tumours it should be openly talked about.

Drug Cap has critical research implications

The announcement of NHS England’s £20m cap on costs of new drugs is the strongest signal yet that directions in cancer research need to change. Whether other countries will make similar decisions is hard to know, none have such centralisation as we have with the NHS.

Why, I hear you ask, does cancer research need to change direction?

Research is dominated by the pharmaceutical industry in its ceaseless search for new agents which can be patented and whose revenues will then fund the next generation of drugs. They also fund our pension schemes, we must not forget that. Socially we have a dichotomous relationship with them, we want their profits but we recognise that we are funding them. This hidden agenda has been present throughout the increasingly tense relationship between pharma and its demand for higher and higher prices, and healthcare systems which somehow or another have to be funded by consumers.

Now NHS England is calling a halt.

The £20m cap means a drug which costs £5,000 for a treatment will only get funding for 4,000 treatments. A course of eight treatments means that only 500 patients can get funded. This might work with a rare condition, it won’t where there are high volumes of patients. The signal to pharma is ‘drop your prices’. It is quite unequivocal. There will, of course, be plenty of occasions when the value of a drug is perceived to be so high that the cost beyond £20m will be carried; even so ‘drop your price’ will still be the message.

Research now has to focus on ‘value’, not clinical benefit. Pharma-led research has been driven by outcomes such as Overall Survival, and various surrogates for it like Progression Free Survival. Patients will tell you that survival with heavy side-effects is not necessarily good value. Spending all the time gained from treatment taking yet more pills, travelling to and from hospital or confined to home is not good quality of life. It is that quality which needs measurement and independent reporting. At the end of the day only patients can tell the regulators what represents good value.

There is another impact on research. There is now a real need for academic researchers to push pharma to look again at drugs which have not entered standard clinical practice. A drug which failed against the Overall Survival outcome for one cancer may have real value in another cancer. A drug licensed for one condition may have value in another for which it is not explicitly licensed. The value for pharma could be an extended exclusive patent period.

There are also drugs available to generic manufacturers, who are familiar with small scale proof of equivalence studies but rarely undertake exploratory studies. There should be the opportunity for academic researchers to work with them to open up new treatment opportunities, perhaps in rarer conditions where there are indications a drug might add value. A core issue here is preserving some income exclusivity for a company or companies which invest in this way. This is a regulatory challenge.

There is a huge resource out there which is largely unexploited. The £20m cap is a strong signal that we must start thinking outside the box


Hellish Decisions in Healthcare

The NICE decision not to recommend funding of Kadcyla for advanced HER2 positive breast cancer is about to re-awaken the drug regulation nightmares of the Labour government in the period up to 2010. One of the very first decisions David Cameron took in 2010 when he became Prime Minister was to set up the Cancer Drugs Fund, taking decisions away from NICE and putting them, so he thought, into the hands of doctors. It may not go down as his greatest mistake (I leave that to others to discuss) but it delayed for more than six years the debate about hellish decisions in healthcare. Just enough time for him to get out of the firing line.

The CDF grew rapidly. It treated an impressive number of people. Within four years it was overspending and started to cut back. It was widely seen (perhaps cynically) as a licence to pharma companies to price new drugs at a level best described as “what they can get away with”. Last year the CDF was merged into NICE and integrated with the standard appraisal process. Kadcyla is the first of the CDF big spenders to get a formal appraisal.

For all it’s perceived failings NICE is not populated by insensitive people. The reality is that Kadcyla offers many of the patients who receive it many extra months of life with a good quality of life. It won’t cure them. We are going to see this reality stated more frequently now that NICE is appraising drugs on the CDF list. The other side of the reality is that the cost of these drugs is extremely high, despite discounts, patient access schemes, relaxed assessment criteria for end of life treatments etc. It is clear that the NICE model, often described as putting the appraisal committees between a rock and a hard place, is running onto the rocks. It has to refuse approval even though the truth is that Kadcyla is a better drug than many that have been approved already.

It’s not just happening around cancer. Just before Christmas America’s FDA licensed Spinraza, a drug for treating spinal muscular atrophy. This is currently untreatable. It is a rare genetic, distressing and disabling condition affecting children and adults. NHS Choices estimates that in the UK there are between 2000 and 2500 patients. The drug has been priced in the USA at $150,000 per shot. The first year of treatment requires 6 shots and later years 3 shots each. At a cost of $900,000 dollars, converted into sterling, discounted (because that would be necessary), we could still reckon that starting 50% of UK patients on treatment would cost £600 million – similar to the cost of all cancer surgery.

So where do we go? There will not be another cancer giveaway like CDF. That card has been played and such luck has run out.

We have on the one hand the prospect of cancer care getting frozen in time because new drugs cannot be afforded, even though they are better than the standard therapies. On the other we hand over large percentages of the NHS budget treating ever fewer people. Neither is a workable place to be and no one is offering a route out of nightmare.

Hellish Decisions in Healthcare is a conference at Oxford University on Thursday (12th January) bringing together some of the clearest thinkers in this space, doctors, health economists, commissioners, researchers, public health specialists, academics and at least one patient. Follow the twitter feed #HDIH2017

New Year Resolutions in this post truth world

In this post-truth world public figures have a tendency to talking solutions rather than rationally discussing the nature of a problem and reviewing the evidence which identifies it. The temptation to lie to support their case is emphasised. Just as important is their ability to deny expert evidence and call someone who is taking them to task a liar.

Extremist thinking leads to extreme expressions and extreme behaviour, well evidenced by the EU referendum campaign and the Trump presidential campaign in 2016. British politics is culturally unable to call a blatant lie a lie, partly because of a parliamentary convention aimed at avoiding extreme behaviour. There are no such constraints in the USA and their recent election campaign was the worse for it. Neither situation is desirable.

The Leave campaigners offered a simplistic solution to a complex problem, turned it into a populist mantra, and lied to achieve their objective. They had no plans on how to deliver a practical solution. Donald Trump identifies problems and talks solutions, but when he chooses a problem he fails to consider contexts and dismisses any evidence which either supports or denies the solution he has chosen.

The UK is the worse off for Brexit, the USA will be the worse off for Trumpism. It appears that Theresa May is being very level-headed, aiming to mitigate the damage caused by lies. We must hope that level-headed Americans will surround Trump and deliver rational policies.

In politics of course no-one ever makes a mistake. This extreme solutionism supported by self-justification based on level of volume, is a ‘movement’ or a ‘style’. Sadly it is being reflected in other areas of public life too.

In religion simplistic extreme approaches affect both Islam and Christianity. The jihadist view is based on selective literalism, they shout loud, put down co-religionists who disagree, and are violent. There are Christians who are just as selective and as literal, though not with the same violent intent. They can however use violent language to attempt to diminish other Christians who have a more considered faith.

Fortunately we do not often see this kind of behaviour in medicine, the denial of the MMR vaccine was perhaps the biggest example. There are some unsettling undertones in US based email lists where patients get advice, sometimes quite extraordinary, and viewpoints can get very vocal support. The hyping of drugs, manipulating media ‘experts’ and patient interest groups, and setting exploitative drug prices is all slowly being brought under control. However generally it is a area where evidence rules, and good science is appreciated.

The lessons of the medical world should be carried into political life. I would suggest for our politicians some New Year Resolutions, built on the medical research world.

Construct your argument rationally, without emotion, seek and recognise good quality evidence.

When you use evidence pay proper regard to the conclusions the researchers arrived at.

Don’t assume that someone with a view which opposes yours is stupid or telling a lie.

Don’t assume that an expert has an interest in denying a cause just because his evidence does not support it.

If there is a lie, and the evidence shows it to be one, say so.

Research and advanced sarcoma

The research results reported at ASCO for sarcoma are of special interest this year because of the rise of immunotherapy as a cancer treatment. The expectation is that because sarcomas rely on gene mutations which the immune system fails to recognise it would, like other cancers, respond to immunotherapy. The treatment relies on two approaches, stimulating the immune system to overcome cancer’s ability to evade recognition and to block the ability which tumour cells have to hide from the immune response. This combination of approaches works well with melanoma, although the side effects are challenging and can require in-patient treatment.

Yes, it has been tried with sarcomas, albeit so far in small exploratory studies. The problem is that these explorations are not showing that any benefit results. It is very early days and we must hope that more extensive studies will deliver positive results. Researchers are optimistic but I have been around long enough to be cautious.

All kinds of treatments have been trialled to treat advanced sarcoma. A few individual patients have benefitted each time, I am one of them, but no drug treatment has come through to show the degree of patient benefit that would allow it to replace doxorubicin as the first chemotherapy of choice, the worldwide clinical standard.

Having all our eggs in one basket is not a strategy anyone wants to subscribe to. So research with other approaches to treating advanced sarcoma continues. It is an impressive list:

  • Molecular alterations to doxorubicin to improve its effectiveness and remove side effects
  • Innovative cytotoxic treatments using natural toxins
  • Better understanding of sarcoma mutations with the aim of matching existing or innovative new drugs to treat them
  • Exploring new drugs prospectively based on tumour characteristics, often through so-called basket studies
  • Exploring combinations of treatments which individually don’t quite make it, combining them with doxorubicin or with new drugs
  • Looking for a maintenance therapy which may prevent metastases
  • Developing new non-invasive techniques for removing lung metastases (eg RFA, SABR)
  • Understanding the value of surgery, especially with new techniques such as laser knife
  • Looking at the quality of life for patients with advanced disease, especially when further ‘curative’ treatment would be futile

Some of these approaches are showing positive results. It is increasingly important for clinicians to know the histological sub-type of sarcoma and to have genetic information. Alternative first-line treatment is currently for a small minority so it means that foreseeably patients with advanced sarcoma will continue to face the future with uncertainty.

Only a minority of sarcoma patients develop metastatic disease. Some will have recurrences which are local in their nature and although it is not nice to have to undergo further treatment they can be curable. There is hope the longer you can stay alive, so if the disease starts progressing taking every valid opportunity that arises is a realistic strategy. Our oncologists will be as encouraging as they can be within the bounds of realism when metastases appear. However where choices are offered there is little evidence which will definitively support one treatment approach over any other, although where surgery for metastases is offered my advice is to take it. Surgery is only a valid approach for a small proportion of patients, those with so-called oligometastases.

The annual ASCO event brings together specialists from across the globe, no other cancer event is comparable. Sarcoma is no exception to the rule. While it is exciting to see the range of research which is being undertaken to improve matters for patients it is a sad fact that in bone and soft tissue sarcoma we have not yet seen the kinds of breakthrough that have taken place in breast cancer, leukaemia, kidney cancer or more recently in melanoma. There is the example of GIST, a sensation at ASCO 15 years ago. It shows that it can be done in sarcoma, so there is hope, our specialist scientists and clinical researchers believe it can be done, we have to support and encourage them.



How did we get into this mess?

Earlier in the year I commented on the achievement of an important academic clinical trial, STAMPEDE, which showed that docetaxel given as soon as a prostate cancer patient relapses can give up to 22 months extra life (even more for some patients). NICE says that the drug should only be given after hormone therapy has stopped working. It will take NICE a year or more to re-visit its guidance but NHS England can make a decision to issue guidance which changes practice immediately.

It is three months since the study was presented, although the inevitable delay until it is published means that the scientific paper is not yet available. However that “immediate” decision is not forthcoming.

The delay in getting docetaxel into earlier use in relapsed prostate cancer is unbelievable bureaucracy. The data are not in doubt. The study was funded by Cancer Research UK and the Medical Research Council – blue-chip funders. The investigators were our top research clinicians in prostate cancer, led by Professor Nick James from Birmingham. What is more, it is likely that the relatively small costs of the change will be at least balanced by savings in care costs.

This is a gross betrayal of the goodwill of patients who enter clinical studies.  

For those of us who enter studies the altruistic component in our decision-making is significant. We want our contribution to be better treatment for later patients, assuming that better treatment is proven, and we are happy to take that risk. This study is a superb tribute to the patients who entered STAMPEDE. The NHS England delay is an appalling abuse of power.

For a bureaucrat, whatever pompous title he may carry, even if it is Secretary of State, to delay a change in treatment practice betrays all patients entering clinical studies.

Let no-one in Government be in any doubt that this delay also damages cancer research, contradicts everything it says about having targets for cancer survival, and shows that what it says about increasing efficiency is boloney when it comes to actual treatment.

Patient Involvement in Cancer Research – a cause for concern

We are seeing a real shift in patient involvement in healthcare research. It is very encouraging to those of us that have been involved for a decade or more to see how the word is spreading. This is despite the relative disinterest in it shown by the current UK government. Its predecessor was an encourager and ensured that small pots of cash and other resources were made available at crucial moments. The disinterest is perhaps most noticeable in cancer research, for long a leader in the field of patient involvement – not the only leader it must be said but probably the most prominent.

The main organisation in clinical cancer research and the management of late stage trials was the National Cancer Research Network (NCRN). It is the organisation that raised patient accrual into cancer studies from 3.5% of incidence to well over 20% of incidence, a world leader. It is now no more – subsumed into the National Institute for Health Research Clinical Research Network structure.

(For acronym watchers this abbreviates to NIHR CRN. It has a Co-ordinating Centre for which you add CC. I believe it is the current leader in the NHS’s secret competition to adopt the longest acronym.)

There are now 30 speciality areas in healthcare research under the wing of the NIHR CRN. Looking at the list of specialities it is impossible to find one where advances in care informed by high quality research is not desirable. Most have a disease focus, a few such as Critical Care and Public Health have a broad remit across a wide range of diseases. None is as large as cancer in terms of the number of studies underway, or the amount of cash invested, or the range of research funders, or the number of industry funded studies which are accredited for NHS support. However all are shoe-horned into the one over-riding structure.

There are now 15 geographical networks. Cancer research used to have 30 local networks each with a patient ‘partnership’ group. Other diseases had differing numbers of networks, with lots of overlaps and some of them did not have national coverage. This government’s approach to simplifying things has forced everything into one structure, ditching lots of expertise and muddling priorities along the way. Each of these plump ‘no longer local’ networks has a patient involvement strand but because of costs the recruiting tends to be around the geographical centre where the network has its headquarters. There is, of course, no guarantee of any involved patient having the specific disease experience that a researcher might like to call upon.

At a national level patient involvement in cancer research has shifted from NCRN to NCRI. The ‘consumer’ group was always called an NCRI group, even though it was run by NCRN. It has also changed its name to the NCRI Consumer Forum. Membership is largely the same but retirements and the need for continuing recruitment to CSGs means that a high proportion of members have been recruited in the last year. The big problem is that funding from the government has been lost. All credit to NCRI members who have agreed a budget and to NIHR CRN CC, which has contributed. The NCRI has also become incorporated as a charitable organisation, with a board of Trustees which includes a patient and is chaired by the CEO of a patient charity. Its members are its funders, not directly represented by the Trustees.

This is a story of the steady wearing down of patient involvement resources hidden through structural changes and shifting budgets. Getting clinical research into one amorphous structure to the disbenefit of cancer research may appeal to NHS control freaks and the envious. Cancer research is disliked by many in other research areas because it is so large and consumes such large budgets. I have heard the argument that it has been a favoured child for too long. Creating a bland giant in which it has to fight for every bit of territory appeals to some. Allowing nationally funded patient involvement in cancer research to wither away probably pleases those people.

The importance of patient involvement in the development of new studies is now undeniable. Researchers are required by many funders to demonstrate how the user community has influenced their study and patients sit on the award panels of all kinds of research funders. In cancer the peer review process through the NCRI Clinical Studies Groups includes patients and carers, a ready resource immediately available to researchers following that route. However there is no certainty that funding for that immensely important resource will continue.

Independent Cancer Patient Voice (ICPV), a small charity supporting patient involvement in research, responds to a steady stream of researchers wanting different kinds of involvement in research, from looking at initial ideas, reviewing patient information leaflets and providing membership of trial steering groups. Presumably these researchers can no longer find that expertise in the patient groups in their big bland otherwise distracted local research networks – surprise surprise!

The growth in pharmaceutical company interest in having the views of patients is also noticeable. Novartis has undertaken a pan-European project EPALCO to make the company more patient-focussed, although because many of its studies are designed in the USA where patient involvement is almost non-existent, there are still some barriers to overcome. Astra Zeneca and Amgen are two other European pharmaceutical giants with relatively advanced ideas being actively explored. The lesson here is that the pharma companies usually fund this work.

So patient involvement in cancer research is increasing but the resources available are disappearing. ICPV bears a growing burden, at no cost to the research community and its members give their time free of charge. There is a strong core NCRI group which government has stopped funding after twelve years and seems ready to allow to wither away.

This must be a concern for the NCRI Trustees. What a depressing contrast with all the high sounding words from ministers about healthcare being centred on the patient, about sensitivity to patient needs and the importance of research delivering what is of value clinically.

Cancer Outcomes Conference 2015

National cancer conferences all take on a character of their own. If organised by one of the charities that charity’s agenda naturally takes centre stage, along with its chosen names. There are two conferences organised by national bodies – the NCRI Cancer Research Conference in November and the NCIN Cancer Outcomes Conference in June.

The NCRI Conference is, quite naturally, about research. Its agenda is developed over a year ahead so that international names can be booked while their diaries are clear. Themes are decided on and it takes a major shift in science (which doesn’t happen often) for things to change at short notice. It attracts about 1500 delegates, mostly scientists, a few cancer clinicians, a group of interested patients, and science managers from all over the place.

By contrast the NCIN Cancer Outcomes Conference is, nominally, about NHS data and how we use it. That’s a rapidly changing world and the agenda develops and shapes over the months, finally settling down a few weeks before the event. It attracts a wide variety of people including clinicians and researchers with an interest in how data is gathered and used, a group of interested patients, and of course lots of those who gather, manage and analyse data. About 500 people come.

It sounds rather dry and geeky. On the surface of it the Cancer Outcomes title doesn’t help a lot either, implying death on the one hand and survival on the others – a bit black and white. There is nothing monochrome here though.

NCIN is one of the great achievements from the reign of Professor Sir Mike Richards as National Cancer Director (there were many others too). Eight years ago the NHS gathered enormous amounts of data about cancer and did very little with it. One of the problems was that no single bit of it joined to any other bit and it took huge amounts of effort (and cost) to explore and match different datasets to get even quite simple analyses completed.

The Cancer Reform Strategy at the end of 2007 set out the plans to change this situation and the National Cancer Intelligence Network was formed, initially reporting to NCRI. There were many barrier to overcome. Cancer registry coding of tumour types had to be standardised across eight registries in England. Before cancer registry data could be mapped against Hospital Episode Statistics (known as HES) differences in understanding of common terms had to be sorted, additional codes in registration had to be developed to cover information which was needed o complement hospital activity, and one-off data practices in individual hospitals had to be resolved. Getting up to date data was also a problem, at the outset the most recent that could be reported was three to four years out of date when eventually available at all. It was also very quickly noticeable that radiotherapy and chemotherapy datasets just did not exist anywhere.

The NCIN 2015 Conference is probably the first event where we can say that the hard work by a lot of people to sort these problems has created an accessible network ready to answer questions from clinicians, charities and NHS managers. Data is now available in not-quite real-time, its certainly capable of giving very up to date views. It has also stimulated research using datasets not included because NCIN actively supports researchers wanting to push boundaries.

If we need to offer just one example of where NCIN analysis is changing things it is in the understanding of patients diagnosed with cancer following a visit to A&E. We always knew it happened. When it was analysed the shock was the scale of it and the poor survival of patients diagnosed by that route. Over 25% of patients are diagnosed through A&E and 50% do not survive one year. Steps to challenge this situation are underway. We are not yet certain but it increasingly looks as though poor awareness of cancer symptoms is the key reason why our survival statistics are generally so much poorer than many other similar countries.

NCIN 2015 was co-organised with the Northern Ireland Cancer Registry and Queens University Belfast. The programme was breathtakingly broad. Plenary sessions looked at issues in a more strategic way while parallel sessions looked at specific issues in greater detail. Parallel session topics included Prevention, Early Diagnosis, Clinical Practice, Treatment, Childhood and TYA Cancer, Inequalities, Survivorship, Epidemiology, Data Management and the Chemotherapy Dataset. Plenary sessions considered the International Perspective, General Practice and Cancer, Childhood Cancers and the crucial topic, Changing Clinical Practice – the importance of Routine Data and Cancer Registries.

There were some very distinguished speakers. Among them Professor Sir Richard Peto offering an up to date international view of smoking, Sara Hiom from Cancer Research UK, Professor Michel Coleman, Professor Paddy Johnston, and Professor Sir Alex Markham. There were important faces missing, the journey to Belfast proving too daunting for some who should have been there but shall remain nameless.

I had the privilege of co-chairing the Plenary session on General Practice together with Professor Greg Rubin from Durham. Cancer conferences in the past ten years or so have often griped about GPs and their inability to diagnose cancer, while at the same time understanding the reasons why they find it problematic. This session was the first time that General Practice has been given a voice in a major national Cancer Conference so it was long overdue. I felt very encouraged by the presentations which gave an objective view of the key issues and described some of the work going on to understand them better. Professor Willie Hamilton from Exeter, who has been clinical lead for the NICE review of its guidance to GPs about diagnosing cancer, gave some insights into that work which is being published Tuesday 23rd June.

Thanks and congratulations go to the organising groups for the Cancer Outcomes Conference 2015 – NCIN led by its Director, Chris Carrington and QUB led by Dr Anna Gavin.


Its been a strange few weeks. Getting back mobile has been my main priority after nearly three months of immobility and then slowly increasing capability. I had been looking for ward to getting into the swim again and was able to attend the Cancer Outcomes Conference organised in Belfast by NCIN, more of that in a later blog.

On Saturday I was at the Sarcoma UK Talking Research event in Manchester. What a great day ! Sarah Macdonald (SUK’s Head of Research) had done a tremendous job in selecting and briefing top scientists and clinicians and the audience of patients and carers (about 200) (plus a few non-speaking doctors and nurses) engaged and learned. Everyone spoke at a sensible level of understanding, scientific terms were explained, and concepts which are difficult to get hold of used explanatory slides. As a scientific meeting with a patient focus it was exemplary. I’ve been to a few in my time but none to beat this.

Dr Gareth Veal from Newcastle gave the best explanation of cancer pharmacology and its role in helping get the best dose of drug suitable for an individual patient. A translational study is running alongside the EuroEwing 2012 clinical trial so the Newcastle unit is turning its research understanding into clinical value and, hopefully, increased benefit for each patient in the study.

Dr Robin Young is a medical oncologist in Sheffield with an academic research role as well. I first met him some years ago when he was working on his PhD and was impressed by his commitment to a dual clinical/science role. He was working on angiosarcoma then and his work has taken an unusual direction looking at the commonalities between angiosarcoma in humans and dogs. This stemmed from discussions at the British Sarcoma Group four years ago with a leading veterinary oncologist. Angiosarcoma is common in larger dogs. The tumour similarities are apparently strong and the study is looking at how development of new treatments might be trialled in dogs and those results could benefit human patients too.

I had the privilege of giving a short lecture in memory of Paul Robson, who died in a heart operation in January. Paul was a long-standing sarcoma survivor, an active advocate locally in the East Midlands and latterly working with Sarcoma UK nationally too, on behalf of sarcoma patients. My personal reflections about involvement in research as a patient go back more than 12 years, starting when times were different. I kept it short. I was joined by Mike Francis and Chris Copland who are both deeply involved with EuroEwing. Chris is also attending and speaking at international paediatric cancer conferences making the patient/carer voice heard. Sarah Welby, the sarcoma research nurse from the Christie Hospital, described her role and how they worked to ensure that patients in clinical studies received the best care.

After lunch Professor Ted Hupp from Edinburgh talked about the p53 gene and his research into how this gene, which seems ubiquitous in cancer, probably has a key role to play in the treatment of sarcomas. A study with an experimental drug targeting p53 showed benefit for a cohort of liposarcoma patients. Sadly the company owning the agent decided against developing it further – a story we have heard rather too often with sarcoma drugs. It is clear that the pharmaceutical industry business model is far too focussed on common cancers.

Dr Paul Huang from the ICR in London looked at drug resistance to tyrosine kinase inhibitors, with a focus on pazopanib (Votrient). He started with a diagram of a cancer cell, and then said it was a simplified version, to everyone’s gasp of horror. He described how pathways could be defined and using a London Underground metaphor explained how cancer was clever, and found new routes to its objective when its first route was blocked. Understanding this in sarcoma patients will help identify those more suited to targeted therapy and also point to other therapies if applicable. This research is opening up new understanding of how cells work and could have ramifications much more widely for development of tyrosine kinase inhibition.

The last speaker was Dr Nick Gough, a palliative care specialist who undertook one of the first studies funded by Sarcoma UK. It is an extensive view of quality of life in advanced sarcoma with both qualitative and quantitative elements to it. It generated a lot of interesting data and Nick provided an updated view (there have been posters and previous presentations at various conferences). The final paper has been prepared and will hopefully be in print later in the year or early 2016.

The morning session was chaired by Dr Mike Leahy, medical oncologist at the Christie, and the afternoon session by Professor Lee Jeys, orthopaedic surgeon from Birmingham and Chair of the NCRI Clinical Studies Group for Sarcoma. Both have a relaxed and easy approach which patients readily appreciate and which the speakers could echo. There was real appreciation of the accessibility of the talks.

To close the day Richard Whitehead MBE, Sarcoma UK’s patron, Paralympics gold medal winner and the world’s leading marathon runner on prosthetics, talked about his 40-day 40-marathons run from John O’Groats to Lands End. A truly inspiring man, a great story and a real high with which to finish a great day.