Category Archives: Media

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.

Setting the record straight on cancer research

Buist-colour

Cancer research is about testing evidence strenuously and objectively and can’t be judged by innuendo, conspiracy theories and pseudoscience, writes Steve Buist.

First things first. I’m not a doctor, and I’m certainly not an oncologist, so do with that information what you wish.
I do have a degree in biological science, and I’ve written about cancer for the past 18 years, which has given me the chance to learn from some of the best researchers around.
Science is the process of gathering information through the ongoing application of critical thinking. Science is about evidence and testing that evidence strenuously and objectively.
I believe in evidence-based medicine. I also believe in evidence-based journalism.
Recently, the Hamilton Spectator published an opinion piece with the provocative headline, “War on cancer, like the one on drugs, has failed us.
The piece relied heavily on innuendo, conspiracy theories and pseudoscience rather than evidence. I think it was irresponsible, bordering on dangerous.
Among the piece’s most absurd statements: that there is no known cure for cancer, that we should stop looking for a cure for cancer, that Big Pharma is sitting on a cure for cancer (which seems contradictory to the first two points), that people don’t die of cancer, and that 75 per cent of doctors would refuse chemotherapy themselves.
Where to even begin?
Let’s tackle the last point first, which the author stated came from “one survey” he had seen.
It turns out that, upon closer inspection, the 75 per cent figure has been taken out of context  from a survey that asked doctors a very specific question about a very specific type of harsh chemotherapy for a very specific type of incurable cancer in its terminal stage. That’s irresponsible.
No cure for cancer? That will come as a surprise to the many men who have been treated successfully for testicular cancer, which has a 97 per cent survival rate, or prostate cancer, which has a 96 per cent cure rate (based on five year survival). For women with breast cancer, nearly 90 per cent of them can expect to survive five years or more.
Overall, two out of three cancer patients will now survive at least five years, the amount of time once considered the standard to be deemed a cure. That’s up significantly from about 50 per cent two decades ago.
Could medicine be doing better? Sure. The war on cancer has been disappointing, if a 100% survival is seen as the goal. Treating metastatic cancer remains a particular challenge.
But part of the problem is that we’ve given one label – cancer – to a disease with a couple of hundred different types. It’s not surprising that finding solutions to hundreds of different problems has proven to be a challenge.
There is no one cancer and what’s become clear is there’s no one magic bullet that eradicates it.
Big Pharma sitting on a cure until they figure out how to monetize it, “as has been rumoured for years,” according to the author?
That’s out there with the faked moon landing type of conspiracy theory.
I’ve been critical of the pharmaceutical industry but that’s a level of cynicism even I can’t comprehend. It’s also highly insulting to the people who have to treat cancer every day.
Do you think someone is sitting on a cure for heart disease because they’re trying to figure out how to monetize it? Osteoporosis? Dementia? Diabetes?
Why would anyone think cancer is different?
Besides, there’s already a simple and effective way to monetize these things – prove that they work and the world will beat a path to your door. Can you imagine what would happen to the stock price of a company that announces it can cure cancer?
Oddly enough, there is one point we do strongly agree on – not enough is done to promote the prevention of cancer.
More than half of all cancer cases are preventable. Changing our behaviours – no smoking, more exercise, better diets, less drinking, protection from the sun – could seriously reduce the cancer burden.
But it still means a significant chunk of cancer can’t be prevented.
People do die from cancer. Too many people. Treatments are still needed.
All the more reason why the war on cancer must continue.

Steve Buist is the Spectator’s investigations editor. He has written several multipart series on cancer and in 2014, he was named best cancer reporter in a competition sponsored by the European School of Oncology. You can read his winning entry here

Health journalism: a great profession facing difficult times

 

maria

Guest blogger María Valerio, who recently left El Mundo, where she had spent 14 years covering health stories

 

I still remember Sonia. I visited her at the nice apartment she had just rented in Madrid after arriving here from a small Spanish city. We were talking about her cancer diagnosis for hours. I remember I was impressed by her courage in facing illness, above all because she was about the same age as me. We were both in our early 20s. She had just received her diagnosis, and I was just starting my career as a journalist.

I wrote her story for El Mundo, the Spanish newspaper I’ve been writing for over the last 14 years. The article received an award from the Spanish Society of Medical Oncology, and since then I’ve met and interviewed dozens of cancer patients.

I lost contact with Sonia, but one sunny afternoon many years ago I ran into her again at a conference for cancer survivors. This time she showed off a long thick mane of hair – unlike the last time I’d met her – but her smile was just the same. She remembered me too, and we chatted about our lives. She was a happy breast cancer survivor activist.

I tell you this tiny story to reflect something that is difficult to say in words when you’ve written about cancer for years. On one hand, there are the scientific papers, the arrival of new drugs and the failure of others, the appearance of immunotherapy and genetic testing, the controversial policy issues that can give you a front page story. But on the other hand, there are the hundreds of patients that you have known.

You can use video, multimedia, innovative digital formats… but if there isn’t a story to tell, a life to share with your readers, there’s no journalism at all.

They are what is most important to me: their lives, stories, fears, families, deaths. I carry them around with me in my imaginary backpack. I can’t imagine other way of doing my job but trying to put myself in their place. You can use video, multimedia, innovative digital formats… but if there isn’t a story to tell, a life to share with your readers, there’s no journalism at all.

For 14 years I was part of one of the best team of health reporters in Spanish media. At El Mundo, I had time to cook my stories slowly, attend medical congresses for days, get specialised in cancer, conduct long interviews and find human stories which raised awareness of many health issues in my country. Unfortunately, as the consequences of the economic crisis in Spain took hold over the last four to five years, this dedicated team of health journalists became a luxury that my newspaper could no longer afford.  With fewer colleagues, there was far less time to write stories, and pressures increased.

A couple of months ago, when staffing levels were cut even lower, I decided to quit. Now, I’m starting the second stage in my career, working in communications at Berbés Asociados agency.

I still breathe as a journalist and I am determined to look for good stories which I can pass to colleagues who may be able to write give them the attention they deserve as I’ve enjoyed doing all this time. Many of them don’t work at traditional established newspapers, but in other outlets that have flourished because of the media crisis (there is always a bright side!). I wish them all good luck!

 

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

Wanted – journalists who break out of the bubble

Peter McIntyre

Peter McIntyre

There is increasing concern about the extent to which we live in bubbles of our own opinions, logging on to websites that support our world view, following twitter feeds from people we agree with and confronting hostile opinions only from internet trolls.

This is the opposite of how the scientific method is supposed to work – by testing and challenging to arrive at a new level of understanding; necessary not only for science but also for deciding where to put resources and how to organise services.

Cancer professionals are good at talking to each other and sometimes to policy makers, but not so successful at helping the public to understand what can be done today, what might be done tomorrow and what is just hype and hope. The public attitude to cancer remains somewhere between despair at the disease and naïve romanticism about cures.

That is the space that journalists are supposed to occupy – questioning and probing to enable well informed and diverse voices to reach the public. But we all know how rarely this happens and how often mass media amplify the sense of confusion.

In a modest way, the European School of Oncology (publishers of Cancer World) has tried to address this. Over the past decade the Best Cancer Reporters Award (now the Cancer World Journalism Award) has recognised excellent reporting by almost 40 journalists from 15 countries. These experienced professionals spent months researching pieces that went below the surface to challenge myths about cancer: stigma that obstructs early diagnosis, inequalities in treatment, the need to preserve fertility in younger patients, the myths peddled by ‘miracle’ healers.

Other journalists have been supported to attend global cancer conferences. Last year that included journalists from Bulgaria, Latvia, Romania, Russia and Serbia –so far as we know the only journalists present from those countries to attend the European Cancer Congress.

They seized the opportunities to grill the experts and it showed in their reporting. Milica Momcilovic, from the Serbian Broadcasting Corporation said “Visiting the European Cancer Congress is much better for a journalist because you can actually see and sense what is going on. When you are the ground and you do the leg work, you talk to people and you learn and you see the shadings of the story.”

And Georgeta Neascu who writes for online magazines in Romania talked about how attending the congress helped her to understand how patients can demand more from their health services. “I have a new perspective and I know more about how I can help.”

The coverage a dozen journalists produced between them was amazing, reaching many thousands of people in nine countries. In a cynical world it is inspiring to see (often youngish) professionals who have kept their enthusiasm and sense of mission alive and rewarding to see what happens when they have access to global experts.

The process of choosing the journalists for the 2016 awards and to attend the ECCO conference in Amsterdam in January 2017 is about to begin. This is an opportunity for journalists who still have a sense of curiosity and a drive to understand and explain. The Journalism Awards will not go to journalists who peddle myths or rewrite press handouts. The Congress places will go to journalists who are willing to learn and to challenge themselves and others. This is an investment in time, skills and people and the results can be inspiring.

I am already looking forward to the results.

For further information on how to apply for a journalist grant to attend the ECCO Congress in 2017 please visit http://cancerworld.net/media/training-events/

Bowie, battles and moonshots: why words matter

Marc Beishon

Marc Beishon

David Bowie died of cancer last week, aged 69, after what his family said was a ‘courageous 18 month battle with cancer’. The singer was celebrated for his many creative phases, such as the time of the famous Space Oddity, even as British astronaut Tim Peake was preparing for a real space walk on Friday.

The day after Bowie’s death was announced, President Barack Obama said in his State of the Union speech that he was backing a ‘moonshot’ against cancer, putting vice president Joe Biden in charge of ‘mission control’ (Biden had lost his oldest son, Beau, from a brain tumour, and had earlier announced his interest in leading renewed investment in cancer).

Obama drew a parallel with the rapid progress in putting men on the moon in the 1960s with the promise of modern day medical science, and said: “For the loved ones we’ve all lost, for the families that we can still save, let’s make America the country that cures cancer once and for all.”

It’s reminiscent of Richard Nixon’s ‘war on cancer’ in 1971, not long after Bowie launched his fictional Major Tom into space and Neil Armstrong did his moon walk. It’s good to see though that the war metaphor seems to have been superseded by an appeal to the might of science, although there are echoes of the Cold War space race here, and we’ve also seen more ‘moonshots’ against cancer and other diseases – it’s another overcooked metaphor along with ‘war’ (the top US cancer centre, MD Anderson, launched a moonshots programme in 2012, for example, but at least MD Anderson recognises that cancer is many ‘moons’).

There are serious points about the use of words. Individuals such as Bowie and, shortly after, British actor Alan Rickman, are still said to be engaged in personal ‘battles’, often in secret. The word battle appears in almost all headlines or news stories about people dying from cancer, and the war and ‘fighting’ theme shows no sign of abating.

It’s rare to see the word ‘battle’ used for people with other chronic and terminal conditions, such as dementia, heart disease and COPD (chronic obstructive pulmonary disease), even though there are many challenges for sufferers and carers. Cancer is also invariably seen as terminal regardless of the type and stage, and progress made in cures, so people are often characterised as ‘battling’ a condition that exhibits few symptoms, has fairly benign treatment and has a successful outcome.

Conversely, a battle against a cancer at a stage that is terminal is framed as something that could perhaps have been fought successfully. It’s why many advocates and patients, particularly those in the metastatic community, criticise the use of ‘war’ and ‘fighting’ terms, such as in a recent US government agency campaign aimed at younger women and breast cancer, Bring Your Brave. Some cancer charities also tend to focus on military metaphors in their fundraising.

Debate and research about the ‘violence’ metaphor in cancer has stepped up in the past few years. An article last year in JAMA notes that “the use of the battle metaphor implies a level of control that patients simply do not have”, and “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long”. Some want a ban on military metaphors (along with other terms used in oncology such as ‘aggressive’ and ‘well-tolerated’).

Recent research includes a study that finds that “exposure to metaphoric language relating cancer to an enemy significantly lessens the extent to which people consider cancer-prevention behaviours”. War metaphors emphasise power and taking aggressive actions toward an enemy – but most cancer prevention behaviours such as quitting smoking involve limitation and restraint.

But other research is more nuanced. A study in the UK looking at the use of the metaphors ‘violence’ and ‘journey’ (the more neutral term put forward as an alternative) by patients and health professionals finds that “violence metaphors are not by default negative and journey metaphors are not by default a positive means of conceptualising cancer” as there are positive and negative aspects of both in terms of empowering or disempowering people.

There are a lot of issues at stake, then, in how the war theme is used, from futile treatments at the end of life, to the wellbeing of those with metastatic disease, and strategies to help patients cope with treatments (young people may respond better to a ‘fight’. Further, there are the wider contexts of fundraising, research directions and the perception of cancer in society (as we recently noted, many people think metastatic breast cancer is curable).

As for the latest moonshot, there’s a well-worn cliché about something not being as complicated as ‘rocket science’. In fact, rocket science is not especially difficult but cancer science is clearly extremely challenging. There’s a danger perhaps of overemphasising ‘big science’ and all the ‘omics’ and not investing in prevention and delivering a high standard of current care (many in the US and elsewhere don’t get optimal treatment, and a moonshot against tobacco could save many lives globally).

Finally, philosophical words from David Bowie: “Planet Earth is blue. And there’s nothing I can do.” Except by all accounts his remaining time after diagnosis was tremendously productive and may become an exemplar in focusing not on the ‘battle’ but living life to the full with cancer, as with any other disease.

And an addition – read this article by Piers Sellers, an ex-astronaut and current climate scientist, on how he intends to spend his remaining time having been diagnosed with stage 4 pancreatic cancer (answer: he’ll be back at work).

It’s time for a model to report cancer news

Marc Beishon

Reporting science can be hard even for experienced journalists used to delving into the depths of papers published in journals, where findings are often expressed in statistical jargon and the science, especially in fields such as molecular biology, can be extremely complex.

Outside of the specialist outlets, much of the mainstream reporting on cancer tends to be about ‘breakthrough’ discoveries, most of which will never reach the clinic, and seemingly endless stories about ‘significant’ associations between foods and drinks (such as coffee) and cancer, either as a risk factor or a protective one.

The problem is that the actual impact or potential of the findings in the studies that led to the stories is often only given patchy or no analysis and balance, while other studies which are on genuine progress and which can have a big impact on patients, such as reducing the number of radiation doses for women after breast cancer surgery, are sidelined in the rush for the ‘cure or scare’ type items, especially in the popular press.

While many of the cancer stories about new drugs and the likes of the ‘coffee connection’ do not have a major public health implication, there are topics that do, such as the recent news items about the benefit of mammography screening, and items about sun and skin cancer and other proven risk factors such as smoking (and the rise of e-cigarettes).

Notably, earlier this year, a study by probably the world’s most eminent cancer researcher, Bert Vogelstein at John Hopkins, and Cristian Tomasetti, was widely reported and prompted fierce debate about the key finding that two-thirds of cancers are due to ‘bad luck’ owing to stem cell divisions that occur at varying rates in different tumours and happen independently of risk factors.

While the statistics, within the parameters of the study, are undoubtedly correct, there are limitations (it doesn’t include breast and prostate cancer) and is on US data, and there was an alarmed response from some, who were concerned that the ‘bad luck’ message would prompt people to lessen concern about proven risk factors such as smoking and sun exposure, and that overall nearly half of cancers can be prevented owing to different environmental and lifestyle factors around the world.

Writing a news item about studies in terms of local context, limitations, harms and costs is clearly very important but too many stories fail on many counts. A number of agencies, such as Cancer Research UK and the UK’s NHS do carry good, balanced interpretations of studies and announcements, and now one site, HealthNewsReview.org, has formalised this process by using a template that methodically assesses a news item and grades it with a mark out of ten. Further, the site is also assessing press releases put out by institutes and journals in the same way, as these releases are often picked up and used uncritically by news outlets.

While covering all of health, the site has so far included many on cancer as it tends to dominate news coverage. Take a paper in Nature on a discovery that a blood-based biomarker can pick up both late and early stage pancreatic cancer with ‘absolute accuracy’ – the reviewers found that several news stories in high-profile outlets failed to position the research in terms of harms, such as unnecessary surgery, and limitations, such as that finding early stage disease does not mean a major advance in life saving, and not least that it is a study that included only a small number of patients with early stage disease.

A screening test for pancreatic cancer would be a great boon but this is not near a clinical application – and achieving only say a half score in HealthNewsReview.org’s criteria does not convey the full implications of the study for readers if it does not grasp the quality of the evidence, commits ‘disease-mongering’ or omits harms and costs, among criteria used in the template.

Journalists are taught the ‘who what when where how’ model of reporting. A widely used process that works similarly through the merits of a health announcement would be a great addition to public understanding of science.

 

The real problem with genetic testing: time

Simon Crompton

Simon Crompton

A decade ago only those with a family history of disease would consider having their DNA tested for disease risk. But who can avoid considering it today? In many countries there is constant pitching from commercial companies offering tests “that determine an individual’s likelihood of disease” or provide “a complete picture of your risk involving 50 or more than 400 genes that can cause cancer” (to quote publicity from one company).

Are we ready for this? Last month Science magazine ran an excellent article by Jennifer Couzin-Frankel, describing her entry into the brave new world of genetic testing as she attempted to find her risk of breast and ovarian cancer – given recent research indicating that those of Ashkenazi Jewish descent were at increased risk even without family history.

She discovered a miasma of uncertainty as a growing number of mutations, many of as yet unknown relevance (unlike BRCA mutations) are discovered and tested for. Clinicians talked of their worries that genetic sequencing technology has advanced so quickly that it is well ahead of treatment plans to act on it, leaving doctors with no answers to the important questions patients ask as a result of findings.

At the end of her testing, because of the knowledge she has gathered as a health journalist, Jennifer Couzin-Frankel could make an informed interpretation. She decided that, on current knowledge, a deletion of 15 DNA nucleotides on her CHEK2 gene did “not merit my mental energy”.

Waiting for the biggest traffic jam in history

But can everyone to make such balanced judgements? Making sense of DNA sequencing for the public is going to be a challenge for the cancer community. And as John Burn, Professor of Clinical Genetics at Newcastle University, said at a recent British Medical Journal conference: “You ain’t seen nothing yet.” He pointed to the immense gains to be made from DNA sequencing, but expressed his anxiety that the “biggest traffic jam in history” was about to hit health services: “We are going to be inundated with millions of variants and we are going to have to make sense of them.”

Journalists and other communicators are going to play a part in helping the public interpret the deluge of information. But it’s difficult enough guiding people through relative risk even when the risk factors are well defined.  Can journalists really equip large numbers act wisely on results of gene tests where the implications are not even clear to clinicians?

Making information useful

If the genetic information is to be genuinely to be useful, rather than simply a source of anxiety and unnecessary interventions, people will need detailed, personalised and time-consuming discussions. How likely is this to happen?

Even if the gene-testing organisations provide genetic counselling, it will inevitably fall to health services to help people through most difficult decisions. Unfortunately, the fact is that lack of time with patients is the most consistent source of frustration among physicians, surgeons, nurses, psychologists and every other profession involved in cancer, (at least, that’s the impression I’ve gained over many years of interviewing them). The need to see the next patient or lack of support infrastructure consistently gets in the way of nuanced discussions about the implications of tests, treatment options and patient worries.

Finding ways to create time and human resources for support and decision-making is already one of the biggest priorities for many cancer services around the world. How much more pressing – and inevitably problematic – is it going to become as genetic testing creates more and more patients, and with increasingly complex decisions to make?

 

 

 

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Is it time to curb the charity fear factor?

Simon Crompton

Simon Crompton

Last week I received a press release from the British Dental Health Foundation, aiming to raise awareness about mouth cancer. It had asked 2500 people to give the words they most associated with cancer. “Deadly”, “devastating” and “scary” were the three most common answers – although the word “curable” was also up there, said the foundation hopefully.

The survey got me thinking about cancer and the fear factor, particularly in the light of recent cancer charity fundraising campaigns in the UK. Ringing disconcertingly in my ears even at this moment are the appeals of Movember to fight prostate cancer and a national Cancer Research UK campaign telling us to “Stand Up To Cancer” (catchphrase: “It’s payback time”) which culminated in a national fundraising telethon in October.

Strong emotions

Stand Up to Cancer was a celebrity-focused effort to encourage the public to give to cancer research. But its telethon illustrated how charity fundraising can become fear-based. The heart-rending story of a young footballer being struck down by a medulloblastoma was repeated throughout the evening. A long comedy segment encouraged all men to get their prostate checked, until a casual query to the resident doctor revealed that it was only worth doing if you were in a high risk group.

The dramatic climax was when one presenter gave a monologue about the people he knew who had died of cancer, yelling “You know what, f*** you cancer.” “You’re like a seventies entertainer, you’ve touched a lot of people,” he said, “and there are ongoing operations to get rid of you.”

It was genuine, and reflected the feelings of many people touched by cancer. But it also demonstrated that, for all the good that cancer fundraising can achieve, there is a risk that it can perpetuate distorted and unhelpful messages – because they are the most effective way of getting people to give.

Research funded by Cancer Research UK has made a big difference to the lives and prospects of many patients, and it deserves every penny it can get. But as I watched Stand Up to Cancer I thought of those thousands of people who will receive a cancer diagnosis and the hundreds of thousands who are living with cancer, and I wondered how the message about the disease being deadly, a bully, the enemy within, impacts on them?

Evidence-based decisions

The message given out by Cancer Research UK’s excellent website has a very different aim: to give accurate information to help people take good decisions, based not on fear but on evidence.

I received a thoughtful response to my last blog post about the need for evidence-based decision-making about screening to prevent overdiagnosis. Dr Nicole Guiochet wrote that such arguments about risks and benefits are hard for healthy people because they have a fixed view about diagnosing cancer early. “He or she cannot imagine nor understand he or she will die with another illness because cancer remains the most frightening of all, even if detected early,” she wrote.

She is right, and public fear of cancer is entirely understandable. But does someone have to address the charity fundraising question: are the messages being sent out by the highly competitive world of fundraising holding back good understanding and good decision-making about cancer? Yes, the money raised does a lot of good, but is stoking up the fear factor too big a cost for those living with cancer or about to receive a diagnosis?

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(How) do you use social media? We investigate

social-networks

ESO and our magazine Cancer World wanted to find out whether, by engaging more with social media, we could make it easier for people in the cancer community to interact with us and with one another.

We therefore contacted everyone on the ESO, e-ESO and Cancer World email lists, to ask them about whether they use social media, and if so how. The survey population included everybody who has ever attended an ESO educational event or conference (plus others signed up to Club ESO), everyone registered for e-ESO’s e-grandround and e-oncoreview webcasts, and everyone on the Cancer World email list.

The 660 responses we received represent a broad spectrum of ages, disciplines and countries. They are probably not, however, broadly representative of oncology professionals in general. The population as a whole is self-selected, having already chosen to engage with ESO and/or Cancer World, and those who responded are likely to be more involved with social media than those who did not.

Nonetheless, we feel the results offer a very interesting picture of social media use among a section of the professional cancer community, including some surprises.

Respondents come from all walks of the cancer community:

Who?
Almost half are medical oncologists, followed by surgical oncologists, radiotherapists, patient advocates, cancer nurses, pathologists, psycho-oncologists, and radiologists.

Where?
More the two-thirds are from Europe.

How old?
They covered a wide age range: the 31–40 and 41–50 age groups accounted for around 30% of respondents each, with around 20% in the 51–60 age group.

We asked: who uses social media?

tick image
85% said yes

cross image
15% said no

Interestingly older respondents were just as likely to use social media as younger ones. Lack of time and relevance were listed as the main reasons for not using it.

We asked how and why respondents use social media
We were pleasantly surprised by the response:

What best describes you use

 

Two out of three respondents who said they use social media, use it to keep up with developments in their field – not surprising.

But many of them are also using social media to interact with other people:

  • to interact professionally: more than half
  • to be part of a community and join discussions: 1 in 3
  • to initiate discussions: 1 in 5

how active are you

While 4 out of 10 respondents  say they use social media only to read what others have posted, almost half of  comment on what they read, 4 in 10 ‘like’ or share links to what others have posted, and a surprisingly high 1 in 4 contribute their own posts.

More than half belong to some form of online group, such as a LinkedIn, Facebook or Google group or email forum, or they follow a blog.

Preferred platforms
We asked which platform people use for ‘professional use only’ or ‘professional and personal’ use

linkedinLinkedIn is by far the most popular, used by almost 75% of respondents (more than 50% of them for professional reasons only)

YouTube-iconYouTube comes next at 54% (just over 10% for professional use only)

 

FB-f-Logo__blue_29Facebook comes in at nearly 44% (less than 3% of them for professional reasons only)

 

Followed by

btn_g_red_pressed.png-27Google+ at around 40% (10% professional only)

 

Twitter_logo_blueTwitter at 30% (11% professional only)

 

This is the first survey we know of investigating social media use among cancer professionals in Europe.

Even allowing for above average engagement among our survey population as a whole, and among respondents in particular, we were surprised and encouraged at the number of oncology professionals who use social media to interact, to join conversations and to start their own.

This survey was conducted as part of an effort to improve our own level of interaction, to play more of a role listening to and sharing what others in the community are saying, as well as spreading the word about conversations that we are promoting through this blog – Conversations for Collaboration and Change – and our magazine Cancer World.

The results of the survey can be found in more details Social Media Survey Results

Join the conversation!
If you’ve not visited this blog before, we hope you will take a look at what we’ve posted in its first few weeks. If you like what you see, we hope you will follow us and join the conversation.

You can follow The Cancer Blog, and contribute your own insights, experiences and comments, via LinkedIn (join the Cancer World group), Twitter (@ESOncology) or Facebook (ESOncology).

If you follow us, we will follow you, and share what you post where it is relevant to our followers, so together we can promote more inclusive and interactive discussion about how to achieve our common goals.

You can also sign up directly to receive alerts about new posts by entering your email address in the subscribe box, on the left-hand side.

War Against Cancer: the audited accounts

 


The truth in samll doses
Efforts to cure cancer are being hobbled by a culture that obliges researchers to think small and cautious while systematically overstating how much is being achieved.

Journalist and lymphoma survivor Clifton Leaf argues this case in his book The Truth in Small Doses: Why We’re Losing the War on Cancer and How to Win It.

His book is the culmination of almost 10 years of research, which generated a number of articles in Fortune, the New York Times and other publications along the way.

It is a call for a change in the cancer research culture, written by someone who knows what it is like to have their life hang in the balance, who believes in medical research, and who has devoted many years to trying to understand why progress is so slow and how we can do better.

In recognition of his achievement in opening up a lively and informed discussion within and beyond the cancer research community,  ESO awarded Leaf the first ever Best Cancer Reporter Lifetime Achievement Award, commending in particular his meticulous research and his ability to make sense of his material and tell the story in a way that is both compelling and constructive.

Resonance
The Truth in Small Doses is a joy to read, with a wealth of anecdotes that on their own justify the cover price. Like the one about the one-eyed surgeon, Denis Burkitt, who – in a goal-oriented collaboration with pathologists, virologists and an entomologist – solved the riddle of the aggressive tumours of the jaw that were killing so many children at his mission hospital in Kampala, with support from a £250 research grant, a 1953 Ford Jubilee station wagon, and a neighbouring hospital director who had a way with cars.

But Leaf also describes a world that cancer researchers are all too familiar with: endless applications for research grants; keen young scientists, full of ideas, obliged to focus on ‘safe’ well-explored topics, with enough a priori evidence to convince grant panels there is a good chance of a positive outcome.

Some points in the book are certainly open to challenge. When it comes to playing it safe, it could be argued that industry is more of a problem than academia. And while there are good reasons to argue, as Leaf does, for more research to be directed at tackling the disease at its earliest or precancerous stages, there are other innovative approaches with an equally strong scientific rationale that suffer the same neglect.

His core message, however, clearly resonates with a widespread sense of frustration within the cancer research community. Leaf speaks the truth, which explains why this book has been widely welcomed.

Going over the accounts
A financial journalist by background, Leaf makes good use of numbers to illustrate his points.

Numbers like these:

691 – the number of times “cancer breakthrough” was mentioned in the media between January 1990 and November 2003
71 – the number of new cancer drug approvals over the same period
45 – the number of approvals for new drugs (rather than new uses for existing drugs)
12 – the number of those new drugs that could show they actually helped keep people alive

Or these:

65,000 – the number of papers published by 2013 on p53
24,000 – the number of papers published by 2013 on c-Myc
$100,000 – estimated cost per study
0 – the number of cancer therapies based on these targets

Or on the process of applying for an R01 grant, the bedrock of medical research funding in the US:

260 – the number of pages in the Application Guide
23 – the number of steps in the application procedure
1 year – the average duration of an application process
1 in 10 – the chance of success

Or these, on the chances of becoming a principal investigator before your 36th birthday:

1 in 20 – the figure for 2013
1 in 4 – the same figure back in 1980

What the figures reveal, argues Leaf, is a culture centred on generating data that can be published rather than generating knowledge that could lead to a cure.

Everyone who wants to see faster progress in curing cancer, and young scientists who don’t want to waste their most creative years, have an interest in reading this book.

Clifton Leaf is deputy managing editor at Fortune. He will be formally presented with the Best Cancer Reporter Lifetime Achievement Award by Franco Cavalli, chair of ESO’s scientific committee, at the International Conference on Malignant Lymphoma in Lugano, June 2015.