Category Archives: Quality of life

A pacifist’s guide to the war on cancer

Peter McIntyre

Peter McIntyre

I went to a musical… about cancer. A Pacifist’s Guide to the War on Cancer was given the song and dance treatment by Complicite Associates and the National Theatre in the UK where has played to packed audiences in Manchester, Exeter and London.

An anguished mother is trapped in an oncology waiting room as her baby undergoes tests. Patients come and go but, unable to leave, the mother moves from denial to bewilderment, despair and acceptance.

A bundle of tcancer cell_Francesca Millsumour cells appears like a rubber toy to give a quick teach-in on how cancers grow; later, inflatable tumours crowd the stage.

This may not sound like entertainment but A Pacifist’s Guide has laughter and defiance, good songs, fantastic dancing as well as very dark moments. None darker than when mother and audience sit for fully two minutes while we are all stunned by the sound of an MRI scan at full volume.

The script by Bryony Kimmings and Brian Lobol reflects the Susan Sontag assessment of illness as metaphor where everyone “holds dual citizenship, in the kingdom of the well and in the kingdom of the sick”. Both authors were committed to avoiding a ‘happy’ or ‘sad’ ending.

Lobel has been writing about cancer ever since he was cured of testicular cancer. “Most people are focused on going ‘back to normal’ and I realised that there is no normal. I was never normal to begin with but I certainly did not go back to being normal.”

Kimmings was interested in why cancer has so many warlike metaphors. ”Cancer seems to have a battle because it is much more terrifying to think that your body turns against you and that you have no control over it.” She sees A Pacifist’s Guide as a plea for greater honesty and understanding. “A common misconception is that it is going to be dramatic. Actually it is a very slow and boring and lonely and all over the place.”

The run of this high octane show is over but Complicite and the National Theatre are discussing if it will continue in some form. It would be good if the show could evolve so that patient outcomes are less detached from treatment options. Currently, its most powerful song presents cancer simply as fate:

“Fingers crossed; make a wish;

“What gruesome game of chance is this?”

It would also have been good to explore the relationship between health professionals and patients and the ability of patients and advocates to bring about change.

My overall feeling however was very positive. Cancer should be on the stage. Let’s keep making a song and dance about it.

Online you can watch authors and cancer patients answering questions such as What is the worst cancer-related advice you’ve ever heard? Start at the Complicite YouTube site

There is also linked site where you can join in a discussion of the issues.

Risks and benefits – what do we patients have a right to know?

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

The principle of informed consent is supposed to safeguard our rights as patients to accept or reject a proposed medical treatment on the basis of an understanding about the risks and benefits it offers.

There are big variations, however, in how it is put into practice, which may impact on the decisions patients take regarding, for instance, when to stop chemotherapy.

Last year, a Supreme Court judgement in a medical negligence case (Montgomery v Lanarkshire Health Board) updated what informed consent means in the UK, effectively bringing it more into line with the principle of shared decision making, by giving legal weight to the patient’s concerns and priorities.

Doctors must now ensure that patients are aware of any “material risks” involved in a proposed treatment, and of reasonable alternatives, with the legal test of what constitutes a material risk being decided by “whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk… or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.”

The Court spelt out that the duty to assess whether a patient would regard certain information as significant requires doctors to engage in a dialogue with their patients, and that it is not up to the doctor to make assumptions about how a patient would rate the significance of any given risk, no matter how small.

Information on quality of life

What does this mean in practice for cancer patients? Taking the example of decisions on taking chemotherapy, whether the intent is curative or palliative, doctors offering this treatment must be able to provide information about the impact on quality of life and prognosis.

A risk to quality of life can be as significant to a patient as any medical risk.  But while doctors have always been required to make information on medical risk explicit in the consultation, information about how patients experience impact on quality of life, presented in lay language, is often missing.

In the light of the Temel study of palliative care in patients with incurable non-small-cell lung cancer – which found that patients offered palliative care soon after their diagnosis tended to have less chemotherapy and yet lived longer – a failure by the profession to address this information gap could be regarded as some kind of professional conspiracy.

Information on prognosis

A recent Dutch study into making decisions about chemotherapy treatment indicates that doctors need also to be much clearer in informing patients about the extent of benefit they can expect. The study asked patients (including patients with terminal prognoses) about the levels of benefit (chance of cure, additional months, symptom relief) they would require to accept mild or intensive chemotherapy regimens. The responses, on average, indicated they would expect high levels of benefits  “beyond what is realistically achievable”.

Following completion of the questionnaire, all the cancer patients in the study went on to receive chemotherapy, despite the likelihood of benefit being in most cases below their stated minimum threshold, suggesting the majority entered treatment with unrealistic expectations, which raises questions about what information they were given and how.

The study went on to explore the reasons for the lack of realism among patients. It raised concerns about the quality of communication between patients and doctors, and it pointed to an earlier Dutch study which looked at collusion in doctor-patient communication about imminent death, and indicated that social attitudes such as “not giving up” reinforce unrealistic expectations and thus acceptance of toxic therapy.

A study of English data published in August offers an interesting addition to our insight on the overuse of toxic therapies in patients who do not stand to benefit. It looked at the use of Systemic Anti-Cancer Therapy (chemotherapy) in breast and non-small-cell lung cancer patients in England in 2014. The patients were divided into two groups, those treated with curative intent and those for whom the treatment was “palliative”, ie it could delay not cure the cancer. They analysed the outcomes for a total of 23,228 patients with breast cancer and 9,634 patients with non-small cell lung cancer in the two groups, and how many of these patients died within 30 days of their last chemotherapy treatment.

In the palliative care group 1289 (8.4%) died within 30 days, while in the curative group 0.3% of the breast cancer patients and 2.7% of the NSCLC patients died within 30 days. There is no evidence that the deaths are clustered, so it is reasonable to assume that practice standards are similar among all the providers although the authors highlighted a small group of outliers.

Patient reported outcomes measures

Where does this leave our rights to accurate information by which to decide on whether or not to accept chemotherapy, particularly in a palliative setting?

I think we need a rapid and comprehensive adoption of patient reported outcome measurements in oncology care, aimed at providing reliable evidence-based descriptions of the impact of systemic treatment on life quality and on the prognostic pathway.

Where is the research on what cancer patients see as significant risk? None of the existing quality-of-life tools are adequate – apart from anything else they measure a researcher’s view of the criteria that matter, not a patient view.

Only through patient-reported outcomes data, effectively communicated, can we reduce the number of patients having their last days affected by toxicity. Using patient reported data could also help doctors break the “collusion” reported in the study from the Netherlands. And in countries like the UK, where patients’ rights to information they consider significant is now enshrined in law, we might also avoid a situation where doctors could be taken to court.



Empower people with cancer by talking about dying


By Tony Bonser

“There’s nothing more we can do for you. Go home and get palliative care.” That’s probably not the best way to tell someone that the treatment isn’t working, but that’s how one consultant chose to inform our son, Neil, aged 35, that he wasn’t advocating any more chemotherapy for his sarcoma. Not only was it untrue – treatment could have done a great deal to improve his quality of life, but it also assumed Neil understood the term “palliative”. This led to him refusing to seek help which would have led to much better pain management.

Nobody told us that our son was dying – not explicitly anyway. We didn’t hear the truth behind the euphemisms because we were in denial. But when he was in hospital and a nurse asked him what he wanted, his reply, that Neil wanted to go home, enabled him to die where he wanted, in his own flat, with his family and his prized vinyls and books around him. Our last memory is of a good death. That is immeasurably important to us.


Neil Bonser (left) pictured with his family at his sister’s graduation.

Neil was given the chance to say what he wanted very near the end of his life. When is the right time? Whenever the person is ready to discuss it. I really hope we can encourage a society where such conversations are seen as natural and healthy.

If they have such conversations, doctors will sometimes find that the right thing to do is nothing. My wife Dorothy used to take Tess, a woman with terminal cancer, to day-care. Tess had a wonderful relationship with her consultant, so when he told her the cancer was spreading and offered her surgery, she knew him well enough to see that he thought she might not survive it. He also suggested another option: a change in medication. “It won’t prolong your life,” he told her, “but it might improve the quality of it. It’s your choice.”

She chose the medication and lived to enjoy a two-week visit from her son from New Zealand, going shopping and taking him for meals at her favourite restaurant.

Another acquaintance with terminal cancer was very relieved when I suggested that he had the right to refuse another course of chemotherapy which his consultant recommended. The horrendous side-effects disappeared and he was able to enjoy most of his last few months.

Sometimes treatment will be a good option in the later stages of cancer, sometimes it will not. For me, the issue is about empowerment. It’s about more than persuading professionals to be patient-centred. It’s about professionals giving patients and family/carers the knowledge to make their own decisions and the power to involve themselves in meaningful discussions. It’s accepting that a good death can be a success. Such empowerment leads not only to a better death, but to good memories, which can help the path through bereavement enormously.

Tony Bonser’s son Neil died in 2009. Since then Tony has become a writer and speaker on end of life issues, a trustee of the National Council for Palliative Care and a local champion for the Dying Matters coalition in the UK.


Targeting and Trust: QoL in clinical research

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

I took a random selection of 20 abstracts from ASCO 2016. None of them mentioned that quality of life had been researched in the study but looking up the detail held in it turns out that 16 of them did have a quality of life component in them. Whether that will be reported when the study is published is a different question. Experience suggests that it will be mentioned, but that for the most part the detailed QoL data will go unreported.

These are the days of ‘big data’ in healthcare. Increasingly we are seeing databases linked, common standards being adopted to allow similar fields to be aggregated, and increasingly comparisons can be made between key outcomes. The International Cancer Benchmarking Partnership is providing fascinating comparisons on survival outcomes from several different administrations – and it is getting into the detail of differences in the ways that national data is gathered.

The first QoL in cancer study appears to have been in the 1970s. The first paper I could find which looked at developing a methodology dates from the 1980s. We now have a proliferation of methodologies dominated by the EuroQoL EQ-5D which gives the kind of generic background view needed for health technology agencies (HTA) to assess the value of the treatment. Other methodologies relate solely to the study to which they are being applied. Unfortunately for cancer patients, the EQ-5D is too crude report the kind of detail that cancer patients need to know to make informed choices about treatment. For that reason too it can only ever be part of the picture for HTA appraisals.

What do cancer patients need from quality of life information? The full picture of the impact of a proposed treatment in the context of the treatment pathway being followed. We want side effects information, how side effects are treated, and want to know how patients feel when taking the treatment in their own words, not those of some detached academic. We want to know about long-term side effects and what comes after if this treatment fails.

The pathway is the key issue in terms of quality of life – it is not a moment in time, it is life. However there are no data covering the succession of treatments, assessing the interactions that can arise as side effects aggregate, and the challenge of describing treatment and quality of life as end-of-life approaches is avoided.

I looked around to see whether anyone is aggregating quality of life data in a way which could provide this picture. No-one. Why not, after all there is at least 30 years’ worth of data around? The quick answer is the usual big data problem, different methodologies, data fields do not match, each study looks at the treatment being tested not at the patient. The pathway is ignored.

“No-one is aggregating quality of life data in a way which could provide this picture”

We are entering the world of targeted therapies. Targeting is a challenge for randomised studies: they can be unethical, either randomising patients when there is good evidence to indicate one arm is more effective than another, or using cross-overs, which invalidate the randomisation. Phase 2 studies usually do not include quality of life because there is no control group baseline with which to compare the treated patient. A strong response rate (60%+) is enough to ensure entry into clinical practice. One result is that patients are offered new treatments without being able to see a full picture of the step they are taking. Possibly just as important, health technology agencies are denied the whole picture of value which they need to make decisions.

Let us leave aside any questions about whether patients will accept such treatments – these issues disappear when survival itself is your primary challenge. Yet, as trials for targeted treatments reach statistical significance faster and with fewer patients than trials for traditional drugs, patients face increasing uncertainty about the impact of therapies they are taking. We need something to mitigate that uncertainty.

A first step would be aggregating existing QoL data to derive a picture of each cancer pathway, modified as clinical standards evolve. It would provide a baseline for comparing new treatments.

A second step would be using one tool/methodology for all QoL in cancer research. Agreeing that step when there are so many competing methodologies is likely to be difficult.

The third step would be requiring a relevant patient group to be the determinant of the measures to be adopted in each QoL study, small or large. Not easy to arrange but do-able.

A fourth step would be mandating full analysis and reporting of QoL data when it is undertaken in a clinical study. That should not be impossible.

If the cancer research community does not take on this challenge we could affect one of the binding factors of cancer care, trust between patient and doctor. Targeted therapy is an amazing development but we are journeying together into an unknown future built on that trust alone, something we haven’t done for more than thirty years.

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – You can find our guidelines here – How to write a blog



Dying: what a curious concept

Simon Crompton

Simon Crompton

It’s Dying Matters Awareness Week in the UK – a time when charities and health organisations emphasise the importance of talking about death and bereavement.

Addressing death doesn’t come easy to many of us, particularly those whose job it is to keep people alive, so the awareness campaign is much-needed and deserves to spread internationally. Doctors know that talking about dying with patients has never been one of their strengths. It appears to acknowledge failure (see my Cancer World article on what constitutes a successful outcome), and brings the prospect of emotion in a profession where cool detachment has become ingrained.

But it’s not entirely their fault. “Dying” is a curious concept in the first place. The word suggests a gradual transition from the state of life to a state of death. But people facing terminal illness experience nothing of the kind. There’s either life or death, nothing in between. In fact, dying is often about living life to the extreme – whether that be a good experience or a bad one, over minutes or years.

No one demonstrates this better than Dr Kate Granger – the UK doctor who was diagnosed with incurable desmoplastic small round cell cancer in 2011. Since then, she’s been writing honestly, movingly and humorously about living a life within limits. (You’ll be able to ready my interview with Kate in the June issue of Cancer World.)

Anyone who really wants to understand why talking about death is important should listen to Kate and her husband talking in a video she made for Dying Matters. As a doctor, Kate has come to understand what it means for a patient to take bad news home and live with it every day.

She knows that talking helps, and has found a supportive community on Twitter, where 43,000 devoted followers hear about the mundanities, triumphs and challenges of her life – from baking cakes to changing health services through her remarkable “Hello My Name Is” campaign asking health staff to introduce themselves to patients.


For people like Kate, who recently tweeted that she is “teetering on the edge of the cancer cliff and about to fall”, dying is an integral part of living life to the full. So for health professionals not to support patients as they explore the prospect of death can deny the possibilities that exist as well as all the challenges.

Being open about dying with patients can also expose dangerous misconceptions and assumptions that both doctors and patients cling to. Los Angeles doctor Ken Murray addresses this issue head-on the issue in the latest issue of Cancer World, in an article that has already prompted soul-searching in the United States.

Almost all doctors, he says, have seen “futile care” performed. Extremely ill patients are cut open, perforated with tubes, hooked up to machines and assaulted with drugs, he says – and what it generally buys is misery rather than life. Doctors know this, and generally would never chose brutal practices such as cardiopulmonary resuscitation (CPR) for themselves or their families.

So how is it that doctors administer them so often? Why is it that quantity of life is valued so much more than quality? Talking honestly about these issues goes a long way and helps patients and health professionals get facts and preferences straight.

Forgetting about the clumsy word “dying” might help. Considering “life left” instead might make all those working in health stop worrying about being death-stopping superheroes and help patients find what they really want.


Filling the knowledge gap on active surveillance

Simon Crompton

Simon Crompton

Active surveillance of men with localised prostate cancer is becoming increasingly popular. It is an observational approach, involving regularly testing, allowing men with low risk prostate cancer the opportunity to avoid or delay aggressive treatments.

Potentially, it’s of huge benefit to thousands of men: a recent study indicated that just 1% of men whose low risk prostate cancer is managed through active surveillance go on to die of the disease.

But, as delegates in Milan at last month’s third ESO Conference on Active Surveillance for Low Risk Prostate Cancer discussed, a big question looms: how do you identify the right men for active surveillance? Clearly, the implications of incorrectly defining “low risk” are major.

The problem is that you have to follow men for a long time to discover whether their prostate cancer will, in the end, prove life-threatening. The likelihood of cancer causing death depends on both the tumour (aggressiveness and extent) and the patient (age and co-morbidities). Without long-term studies characterising the type of disease and person suitable for active surveillance, selection is difficult.

How to define low risk?

In their absence, researchers are trying to find predictors of disease progression to support risk-based selection of patients. Existing prediction models help but, as Ewout Steyerberg from the Centre for Medical Decision Making at Erasmus University pointed out in Milan, much stronger predictors are needed to separate low risk from high risk patients.

The answers are likely to come from large studies analysing existing data from men with prostate cancer – and in particular a major study funded by the Movember Foundation, known as the Global Action Plan 3 project, or GAP3.  Movember has five GAP projects, but GAP3 specifically addresses the question of how you select the right men for active surveillance.

It aims to create a global consensus on selecting and monitoring men with low risk prostate cancer through studying the cases of 10,491 men across 19 institutions worldwide. This is the largest prostate cancer active surveillance database, comprising the majority of the world’s active surveillance patient data.

The significance of GAP3 to preventing overtreatment in prostate cancer cannot be underestimated. Today, one and a half years into the project, all the data from participating centres has been uploaded into a central database. Each patient’s clinical history and biospecimen, imaging and biomarker data is being analysed.

This analysis, due to be complete in August this year, will feed into a simultaneous expert review of all current active surveillance guidelines available around the world, leading to a new consensus guideline setting out which patients are suitable for active surveillance, and what are the most effective ways of monitoring them.

And the end result – available in perhaps 18 months’ time –  will be a web-based platform, based on the guidelines and using risk-based modelling derived from the new analysis, to help clinicians decide which patients are suitable for active surveillance.

Perhaps just as importantly, as Sophie Bruinsma from Erasmus Medical Centre pointed out in Milan, it will also provide some reassurance to men that that they have made the most sensible, risk-based decision about their disease.


Closing the 40% survival gap in Gaza


shayma wahaidi cropped

Shaymaa Al Wahaidi is a pharmacist trained in public health who is about to return to Gaza to support efforts to improve diagnosis and care of breast cancer patients

In Gaza, only around 50% of women diagnosed with breast cancer will still be alive five years down the line, compared to almost 90% in countries like the UK and USA.


I’m a Palestinian pharmacist from Gaza, and I’m about to return there after completing a Public Health course in Oxford, with a view to becoming a public health researcher. My current interest is the lack of support for early diagnosis for women with breast cancer in Gaza. I used to work with breast cancer patients, and I’ve noticed that women in Gaza often present late for diagnosis and have many fears associated with the disease.


The poor rate of breast cancer survival partly reflects cultural attitudes about breast cancer. Some women, for instance, worry about being divorced if they were to be diagnosed with the breast cancer. As result, even if they suspect that they have breast cancer, they sometimes prefer to keep silent and die waiting.


But women can also be deterred from seeking a diagnosis because they know how hard it can be to get access to treatment. Once diagnosed with breast cancer, women face many challenges, and it has been suggested that their treatment in Gaza is below acceptable standards. A few years ago, the Ministry of Health had to appeal to international bodies after stocks of almost 15% of essential chemotherapy drugs ran out, and adherence to scheduled treatments for breast cancer was impossible due to the erratic supply of medicines.


This problem has not been resolved. Last December, breast cancer patients in Gaza organised a demonstration in protest that the medication they need is still not available, and even when it is available, it is unaffordable.


Part of the problem is poor use of meagre resources. There’s only one histopathological laboratory, and there are no facilities for radiotherapy. And yet there are currently four mammography units in Gaza, despite the evidence-based research that challenges whether women in general derive any benefit from mammographic screening. Most of the time hospitals cannot import the chemicals used for the mammography X-rays anyway. Considering Gaza’s disastrous economy – half the population lives on less than $3 per day – spending money on mammography facilities, which charge around $27 per appointment, is not justifiable.


It is my hope that we can start to improve the situation for women and for breast cancer patients in Gaza if we start to direct research attention to how we can improve our healthcare facilities, train up personnel in breast cancer investigation and treatment, and improve adherence to treatment guidelines.


We also need to conduct detailed investigations to understand more, for instance, about women’s experiences and perceptions regarding adherence to treatment, and about their quality of life and their experiences after mastectomy.


As long as health services in Gaza are unable to offer adequate treatments for breast cancer patients, Palestinian women will continue to die from a disease which in many countries is seeing increasingly high survival rates. In addition, until significant steps are taken in early diagnosis, women will continue to present at a late stage of the disease, when the chances of prolonging their lives are reduced.


I hope that when I return home in a few weeks’ time, I will be able to use what I’ve learned to start to make a real difference.

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

The multiple problems women with breast cancer face in Gaza have been captured in a moving animation, “Fatenah”, which follows the journey of one woman from her delayed diagnosis to the multiple delays, stress and humiliation involved in getting access to the right treatment 



We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – You can find our guidelines here – How to write a blog

Progress is made at the boundaries of disciplines

anna portrait  pic

Anna Wagstaff

I’ve been feeling rather smug. Among the 16 sessions taking place on the Sunday evening of the European Cancer Congress (ECC2015), I took a chance on an ASCO–ECCO joint symposium entitled “New Frontiers in Imaging: The solution to individualised treatment”.

Of the 18,000 participants gathered at that congress, I was surprised to find myself as one of only around 25 people at that session, in a hall that could have accommodated 200 times that number. Either I had misjudged the importance of this topic – it wouldn’t be the first time – or I could congratulate myself for having picked up on something of strategic significance that the vast majority of congress goers had completely overlooked.

In this instance, I think I got it right, and this is why.

Treating “the right patient with the right treatment at the right time” has been the mantra of the cancer community for more than a decade now. Yet most of the research highlighted at cancer conferences still speaks to the old agenda.

Typically, the data from the clinical trials show a wide range of responses – some patients barely responding, others deriving a clear benefit. But the presentations are still about the apocryphal “average” patient – if doctors want to give these therapies to “the right patients” they’ll still have to give them to the wrong patients as well.

So this is why, when I spotted a session that focused on “the solution to individualised treatment”, I thought it sounded important.

The presenters offered an alternative approach to personalising therapies that uses the ability of increasingly sophisticated imaging techniques to give a whole-body picture not just of the extent of disease but of many aspects of its biological behaviour.

Some of this is cutting edge science – apparently every one of Hanahan and Weinberg’s “hallmarks of cancer” can now be visualised by different types of imaging.

But what really caught my attention was a creative use of an old nuclear medicine technology to address the problem of overtreatment of patients with colorectal cancer.

Imaging can guide treatment

Around eight out of ten colorectal cancer patients recommended for adjuvant FOLFOX treatment do not benefit from this highly toxic regimen. In some cases this is because they have already been cured by surgery and the additional treatment is redundant ‒ identifying these patients remains a challenge. But in around four patients out of ten the disease comes back because FOLFOX doesn’t work for them.

The solution? Take advantage of the short period between diagnosis and surgery to treat the cancer with FOLFOX, and gauge its level of response by comparing FDG-PET images taken before and after. If FOLFOX has no impact before surgery, it’s unlikely to work as an adjuvant afterwards. That’s the theory, anyway, and it’s currently being tested by Alain Hendlisz and colleagues at the Jules Bordet Institute in Brussels.

If it works in practice, this could be a big deal that would make a significant difference to a sizeable patient group, and open up new approaches to achieving the goal of individualising treatment. It would also be a great example of how important progress so often comes from a creative interplay between different disciplines.

So I’m left wondering why so few people turned up to the session, even though its billing as a joint ASCO–ECCO symposium should have flagged up the importance of the topic.

Was I witnessing the silo mentality in action? Were all the other delegates so focused on their own speciality that they didn’t connect with possibilities coming from elsewhere?

If so, it shows how right the organisers of ECC2015 were to take “Reinforcing multidisciplinarity” as their theme for the conference, but it also shows how much work is need to achieve that goal.

ECC 2015 crowd_arriving small

The European Cancer Congress is a great place for people to connect across the boundaries of discipline and specialism – but you have to want to. Photo: Peter McIntyre


It’s official: Top 10 research priorities revealed for brain & spinal cord tumours

stu farrimond portrait cropped

Guest blogger – Stuart Farrimond, editor of, blogs at

What research should be funded and who should get the money? It’s a fifteen billion euro question – and the answer you get depends on who you ask.

When I practiced as a doctor I believed that medical research should always focus on extending life and finding new treatments. After all, saving lives was why I entered the profession. Emotional, psychological and lifestyle factors are of trifling significance by comparison… or so I thought.

Eight years ago my perspective underwent a seismic shift after I was diagnosed with a glioma – a malignant brain tumour. Only then did I start to realise that well-intentioned research efforts can often miss the point. Treating the tumour alone may extend life, but as a cancer patient I know that life is more than added years. All too often, researchers can set their priorities based on what they consider important, what tickles their fancy, or simply based on with what they have experience in.

Two years ago, Dr Robin Grant, Consultant Neurologist, at the Edinburgh Centre for Neuro-Oncology, set out to find a broader answer to the question of what brain and spinal tumour research should be prioritised.

He gathered key leaders in primary central nervous system tumours, each with a wide network of influence in their speciality, to establish a James Lind Alliance ‘Priority Setting Partnership’. Over the next eighteen months, a collaboration formed between representatives of all those affected by brain and spinal cord tumours: patients, carers, major brain and spinal cord tumour charities and multidisciplinary professional organisations.

The ‘Top 10’ list of UK clinical research uncertainties in brain and spinal cord tumours was developed by the partnership, drawing on the expertise and experiences of all those directly affected by the conditions. Last week, the list was officially launched at the British Neuro-Oncological Society annual meeting, with a call for the assembled researchers and clinicians, and crucially research funders, to use it to inform and guide their own actions.

Here it is:


Top 10 priority research questions in brain and spinal cord tumours

1. Do lifestyle factors (e.g. sleep, stress, diet) influence tumour growth in people with a brain or spinal cord tumour?
2. What is the effect on prognosis of interval scanning to detect tumour recurrence, compared with scanning on symptomatic recurrence, in people with a brain tumour?
3. Does earlier diagnosis improve outcomes, compared to standard diagnosis times, in people with a brain or spinal cord tumour?
4. In second recurrence glioblastoma, what is the effect of further treatment on survival and quality of life, compared with best supportive care?
5. Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumours?
6. Do molecular subtyping techniques improve treatment selection, prediction and prognostication in people with a brain or spinal cord tumour?
7. What are the long-term physical and cognitive effects of surgery and/or radiotherapy when treating people with a brain or spinal cord tumour?
8. What is the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care?
9. What is the effect of additional strategies for managing fatigue, compared with standard care, in people with a brain or spinal cord tumour?
10. What is the effect of extent of resection on survival in people with a suspected glioma of the brain or spinal cord?


The lengths that the James Lind Alliance Priority Setting Partnership process goes to in defining ‘Top 10’ lists is staggering. In March 2014, around 200 people (patients, carers and health professionals) submitted more than 600 research questions on the treatment and care of brain and spinal cord tumours they felt needed urgent answers. These were refined, formatted and consolidated, weeding out questions that previous research has already answered. The resulting 44 questions were then put to another sample of over 200 people to rank in order of priority.

Last November, 29 ‘stakeholders’ used these results to hone in on the ‘Top 10’.This is the point at which I became involved. As both doctor and patient, my priorities were conflicted: the “patient” in me wanted research that could help me deal with symptoms; my “doctor head” however told me that physicians desperately need better treatment data.

These tensions were borne out through the diverse mix of professional and lay representatives. The experienced James Lind Alliance facilitators have the diplomacy skills that could broker peace in any conflict situation and, after six hours of carefully organised voting, ranking and discussions, we finally selected our top 10. Looking back now, it is difficult to imagine a fairer, more representative way to set cancer research priorities.

Thanks to Dr Grant and other volunteers and workers involved in the process, these priorities can now help ensure that future research efforts will improve the lives of cancer patients. After all, improving lives is why we enter our profession.


We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – You can find our guidelines here – How to write a blog

In praise of academic cancer treatment studies

roger Wilson

Guest blogger – Roger Wilson, Honorary President of Sarcoma Patients Euronet










As a patient working in cancer research for over ten years now, one thing has slowly become more and more apparent.


The greatest patient benefit accrues from studies which are academically led. A

bold statement which needs a bit of unpicking.


Pharmaceutically led studies dominate our attention because of the scale of

investment and the power of the public relations team. They may well be led by

talented academic clinicians but the protocol has been driven by commercial

requirements even if it is an early phase study. The reality is that larger and

larger amounts of money are being committed to studies which benefit fewer

and fewer patients.


I am not decrying all that effort. My personal view is that if a new drug can

benefit just one patient let us have that drug. However I don’t have deep

pockets, any more than any healthcare system does, so that principle has some

weaknesses – as does the current pharmaceutical business model.


Beyond numeric significance

Academically led studies, which draw funding from government, charities or

philanthropic sources, may have a component from pharma providing free

access to drugs. These studies can also draw on treatments more widely

available in the market such as generic versions of previously patented drugs.


Academic studies will be seeking to find better ways of treating patients using

more clinically relevant outcomes and taking fuller account of the whole patient.

They are not seeking solely to identify the numeric significance of a treatment.

This sets academic studies apart from highly publicised drug studies with

registration objectives.


The EORTC (a charity) is an important provider of academic studies. The

European Commission is funding studies through its R&D programme.

Governments support studies, often providing funding to a university hospital.

An important source for such studies is the UK, where local funding from Cancer

Research UK is a critical component. Occasionally one trial will stand out.


Two extra years from an off-patent drug

STAMPEDE is a ‘basket’ study looking at a range of drugs in treating advanced

prostate cancer. It is a 7,000 patient multi-arm study. It could not be run by

pharma. Its first results published at ASCO 2015 looked at docetaxel, which is

now off patent. The drug was given earlier than it is in current practice. An OS

(overall survival) improvement of 24% and ‘failure free’ survival of 38%

translates into significant clinical benefit, improving patient longevity by a

median of just under two years.


The Chief Investigator, Professor Nick James from University of Warwick, said

“Our headline conclusion would be that docetaxel should be considered as

routine practice in men with newly diagnosed metastatic disease. With non-

metastatic disease, there remains uncertainty as to whether there’s a survival

benefit or not but it certainly improves failure-free survival by a substantial



Pharma company researchers would give their right arms for results like that in

a cohort of patients as large as this. It will change clinical practice without

truckloads of expensive documentation being required by EMA.


So let’s pay more attention to academic studies. They can change things in big

ways and have the potential to provide patient benefit far beyond the seemingly

eternal procession of pharma company registration studies targeting smaller and

smaller cohorts of patients.

Roger Wilson blogs at