Tag Archives: news

“Voices” – a new home of debate

If you’ve noticed that there haven’t been many posts on the Cancer Blog recently, there is a good reason. We’re now posting in the new “Voices” section of the Cancer World website. Please go and have a look. Like the Cancer Blog, the Voices section provides lively viewpoints and analysis from a wide range of people working in, and affected by, cancer.

This blog began nearly three years ago – a spin-off to the European School of Oncology’s Cancer World magazine. Our aim was to provide a regular showcase for opinion that could lead to the conversation, collaboration and change that is so urgently needed in cancer.

Fifty four posts later, that aim – intrinsic to Cancer World – remains. But in recent years the Cancer World website has grown and flourished, and it now seems entirely appropriate that this should be the home of debate, providing a showcase for cancer voices – whether they belong to doctors, researchers, patients, advocates or policy makers.

So we hope you’ll continue to follow us at our new home – and contribute posts too by emailing us your ideas to staff@cancerworld.net

In order to stay up to date with our posts in “Voices, news from the Cancer World website and details of Cancer World articles we invite you to subscribe to our Cancer World Newsletter. Let the conversation continue…

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