Tag Archives: communication

“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…

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.

Empower people with cancer by talking about dying

Tony2

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.

Family---Sam's-Graduation

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.

 

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/

The real definition of active surveillance: what it means for a patient

Simon Crompton

Simon Crompton

It was only on the second day of ESO’s conference on active surveillance of low risk prostate cancer this weekend that the question was raised: what actually is active surveillance?

“Watchful waiting” and “active surveillance” were for many years regarded as the same thing. In fact, that Bible of medical veracity Wikipedia still equates the two – as observational approaches that allow men with low risk prostate cancer the opportunity to avoid or delay aggressive tests and treatments.

But the field has changed and specialised rapidly in the past 20 years, with the European School of Oncology taking a lead on extending knowledge in the field – organising three expert conferences, of which this was the latest. Those urologists, radiologists and public health experts attending such events are very clear that active surveillance is different from watchful waiting.

What’s the difference?

As Axel Semjonow from the University Hospital Muenster, Germany, explained: watchful waiting delays the need for palliative treatment, while active surveillance delays the need for curative treatment. Active surveillance is more likely to involve a schedule of assessment and tests, such as biopsy. Watchful waiting is more likely to apply to men with a life expectancy of less than ten years and will often follow active surveillance.

But these definitions only became widely used in 2008.

The rapid acceptance that active surveillance is an important strategy for treating low risk prostate cancer has had a lot to do with growing concerns about overdiagnosis and overtreatment in prostate cancer. For many men, biopsies, prostatectomy and radiotherapy produce effects far worse than their cancer ever would. A recent study showed that just 1% of men whose low risk prostate cancer is managed through active surveillance go on to die of the disease.

Conferences such as this are incredibly important for determining the best ways of selecting patients for active surveillance and of monitoring them while on the programme.

But active surveillance is still an emerging art, under-researched and ill-defined. The role of MRI scanning, for example, was a continual source of debate during the conference. We know a lot about its ability to diagnose prostate cancer. But in terms of its accuracy at monitoring disease progression, there are few yardsticks.

When cure seems the only goal

And, beyond the realms of such meetings, the very meaning of active surveillance is poorly understood. There are still varied definitions in scientific papers and guidelines. For prostate cancer patients, mere scientific statements of meaning do little good. Active surveillance offers many men the chance of a long and good quality of life without treatment side effects, but that might be hard to understand amid the stress of diagnosis when “cure” seems the only goal.

As several participants at the conference pointed out, amid the excitement of scientifically advancing this important field, the difficulty of patients understanding the approach and their personal risk should not be forgotten. Good communication has to be at the heart of programmes – and making sure that everyone understands what active surveillance really means today would be a good start.

Highlights from the conference:

 

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.

 

I will survive… Are you positive about that?

Peter McIntyre

Peter McIntyre

Is a positive attitude about survival useful or appropriate when someone is diagnosed with cancer? Is optimism always an asset as an approach to life, or indeed death?

We all love positive energy and celebrate someone who triumphs against the odds, but for many that is not possible. Cancer can be relentless and pitiless; half of those diagnosed with this disease die from it, irrespective of their determination to fight.

A daunting number of friends and relatives have recently died from cancer; more or less within a year of diagnosis. Their own and family reactions will be familiar to you who work in the field. They staggered under the news. Then hopes rose as they learnt about possible treatments. During a period of maximum engagement, they did their best as patient or supporter to reach the distant shore of survival.

In my unscientific sample however, the undertow proved too strong.

As treatments failed, the patient became exhausted; options narrowed, hope became fragmented. The narrative switched to unlikely new treatments, and eventually a need for some breathing space and a bit more time. The final stages were rapid.

Where do you find resilience?

I am wondering what those of you who apply your skills and knowledge to saving life tell yourselves about those you cannot save. Where do you find resilience you need for the next patient?

It is evident that a positive approach to cancer is not always about winning a battle. Sometimes a cure is simply out of reach. In such cases, treatment and care to achieve the best possible quality of life, delivered with compassion, cannot be ‘failure’.

Certainly, the people I know found real positives in loving human interaction after curative treatment ended.

A cousin who put a premium on his independence experienced a remarkable strengthening of his marriage and family life in his final year.

A relative who died leaving a son under the age of two spent her final days surrounded by love. She and her husband made plans for their son after her death; her father read to her; her brother crossed the world to be with her.

A man in the final days of life asked for a latte and Danish pastry to be brought to his bedside. He and his sister responded with almost ridiculous pleasure to this familiar treat he could neither eat nor drink.

As a journalist, I am aware of my own ignorance. But even the most skilled and knowledgeable lack the power of life and death or the gift of prophecy. Neither cutting edge treatment nor a positive approach guarantees survival.

At a certain stage, a determination by the patient to make the most of remaining life and by professionals and family to deliver treatment and care with compassion offers a route to the happiest possible ending. Better to help the patient to be ready for anything, than to stake all on what may prove to be a false positive.

(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).

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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