Tag Archives: reporting on cancer

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.


A new scientific discovery – the good journalist!

Peter McIntyre

Peter McIntyre

If the public is to understand the world of cancer research and treatment they need translators to turn scientific jargon into simple, clear and accurate information. And yes, they do exist. They are called journalists!

ESO supported 14 health journalists from TV, radio, newspapers, magazines, online publications and news agencies across Europe to attend the  ESMO 2014 Congress in Madrid in September.

A top line of experts came and talked to this group on precision medicine, the role of diagnostics, immunotherapy, the changing face of clinical trials and the implications for patient care. The journalists, only some of whom have science degrees, asked sharp questions: How many drugs make a real difference? How can we tell when researchers are over-promoting results?

ESMO 2014 congress Media Room

ESMO 2014 Congress Media Room

Reporting for a lay audience

Later they shared valuable insights into the challenges of reporting on cancer for a lay audience.

Rinke Van den Brink, a health editor for NOS News, the Netherlands national public broadcaster, has a mixed public of “University professors and people who have barely finished primary school.” He describes himself as “a simple journalist who learned to ask questions” and says that if he cannot explain the science in simple terms, it will probably not make it onto the news.

Maria Pineiro, health reporter on El Progreso the Spanish regional newspaper (with 150,000 readers a day) focuses on significant treatments, whether the health system will pay and the social consequences of having cancer, rather than about drugs the Spanish economy cannot afford. “I do not see the point of writing about something that my readers are not going to get.”

Anja Gorenc who reports on health for the Slovenia Press Agency (STA), says that most of the best stories do not come from press releases. “I communicate a lot with other people because I am a journalist. I talk about health problems with my friends, my relatives and that is how I get ideas.”

Emanuela Schweninger, health correspondent for Realitatea TV in Romania, points out that television demands emotional impact as well as expert information. “In Romania we have 50,000 patients who need radiotherapy and only 12 machines in all the country. So if I am a patient who needs radiotherapy now, I need to wait three or four months … and this is a tragedy.

“I love my job. For me to be health correspondent is part of my life….. My mum has cancer so I know exactly what it means and I try every day to help patients who need my help.”

All the journalists benefited from talking to experts at ESMO and many made new contacts with specialists from their own countries. KateTreshchikova, health correspondent for the Russian regional newspaper, Voronezh Messenger, said: “Together I think we can change the situation in our region with oncology.”

Keeping it real

However, they expressed caution about “breakthroughs”. Italian science writer, Marco Boscolo, said: “We have a social responsibility in that we don’t have to provide false hope for people.” And Maria Pineiro, delighted to have learned so much about emerging treatments, stressed the need for realism. “Everybody is trying so hard [but]…. I think we are quite far away from real new treatments that can make cancer a chronic disease which is the main goal I think of most oncologists and researchers.”

These journalists combine a drive to explain the science with a strong sense of humanity. Researchers, clinicians and other experts would do well to watch these short interviews to understand the challenges they face.

Please click on the faces to view each video
Anja Gorenc

Anja Gorenc

Emanuela Schweninger

Emanuela Schweninger

Kate Treshchikova

Kate Treshchikova


Marco Boscolo

Marco Boscolo

Maria Pineiro

Maria Pineiro

Maria Tcherneva

Maria Tcherneva

Rinke Van den Brinke

Rinke Van den Brinke

Sonia Ionescu

Sonia Ionescu