Addicted to wonder drugs

When stories exaggerate the implications of the latest research, is this the fault of the media? Asession on reporting cancer breakthroughs found pressure also comes from researchers and pharmaceutical companies. Maybe the greatest pressure comes froma public desperate for hope.

» Anna Wagstaff

If the collective headlines of the world’s media over past decades are to be believed, the cure for cancer has already been discovered many times over. Yet, with no apparent sense of shame or irony, the cancer cure headlines keep rolling in with monotonous regularity, distorting, misleading and confusing the public about one of the issues that concerns them most.

This summer, ESO took the opportunity of a world gathering of science journalists in London to organise a session on “Reporting cancer breakthroughs: striking the right note” to explore why cancer stories are reported as they are, and whether anything should or can be done to improve the quality of coverage.

The day was July 2nd, and parts of the British media were obliging enough to set the scene by devoting that day’s front page lead to yet another cancer cure. This time it was ultrasound, which, according to the front page headline of the Daily Express – “Ultra-sound cancer cure” – had “92% success in prostate cases… with no surgery”. Following a familiar pattern, the story was based on an analysis of only 136 men, followed up for an average of one year, some of whom had been pretreated for three months with hormone therapy, less than 35% of whom had high risk disease and many of whom would otherwise have been candidates for ‘watchful waiting’. The study itself did not claim ultrasound to be any more of a cure for prostate cancer than standard treatments.

Like many of its genre, this story was interesting enough – perhaps itself a candidate for watchful waiting to see how it develops. Maybe in time this experimental treatment will live up to its billing, but the evidence suggests this is unlikely. A study into cancer breakthrough reporting in Australia has shown that stories like this tend to seriously overstate the implications for patients. Of 31 ‘cancer breakthroughs’ reported between 1992 and 1994 in the Sydney Herald, 10 years down the line, 43% were judged as not having been supported by further research in the following decade, 10% had been refuted, 53% were judged to remain ‘potential’ breakthroughs, pending further research, and only 27% had been, or were about to be, incorporated into medical practice.

This apparent gulf that persists between what is reported about cancer and the reality of developments in the field has long been an issue of concern for many people who are involved with cancer. Judging by the attendance at the ESO session –more than 60 people from five continents – it is of equal concern to journalists. A panel drawn from cancer research, policy making, patient advocacy, industry, medical practice and journalism outlined their experiences, concerns and questions. The subsequent discussion found common ground on a topic that is often dominated by mutual blame and recriminations.

A QUESTION OF PUBLIC DEMAND

One area of agreement is that the volume of cancer coverage is driven by an enormous public appetite for stories. Mike Richards, the UK’s National Cancer Director, spends a lot of his time trying to get key messages across. He said, “Health stories rank very high in importance among the general public, and among health stories, 77% of people rank cancer as the most important.”

One reason will be that cancer is a killer, but as Richards commented, this is not the whole story. “Cancer and heart disease have very similar mortality profiles, but cancer is the one the public fears.”

Fear offers the key to much of the public’s unquenchable thirst for cancer stories, argued Stella Kyriakides, a professional psychologist, who spoke at the meeting in her capacity as a former breast cancer patient and experienced patient advocate.There is not just a deeply rooted fear of death but also of loss of control. “The term‘cancer’is taken from the astrological sign of the crab, an animal that scuttles in all directions – its behaviour is unpredictable,” she said. Stories that purport to identify what might be causing cancer or ways to protect against it will always have a ready audience, she argued, because people derive comfort from feeling there are things they can do, or avoid doing, that can hold cancer at bay.

John Illman, a former health editor at the Guardian newspaper, who chaired the UK Medical Journalists Association for some years, spoke of how cancer stories tick all the right boxes. “Cancer stories are special, because they encapsulate all key news values: novelty, universality, topicality, impact and controversy.”

Public demand for cancer coverage is, however, only one half of the story. On the other side is a raft of vested interests all keen to maximise exposure of their particular area – and to shape the story to their advantage. The discussion identified at least 10 of them:

VESTED INTERESTS

News editors have an interest in sensationalising stories to sell papers or drive up their ratings. Specialist staff reporters can spend a lot of their time trying to shoot down ‘killer banana’ stories that sound attractive but are shallow, irrelevant and overhyped. But as Fran Unsworth, head of news gathering at the BBC pointed out in a related conference session, once a story gets spun into ‘the story of the day’, news organisations are expected to give it a mention. Presenting the story in its proper context tends to kill it.

Reporters have an interest in maximising the attractiveness of their stories, especially now that news websites track the ‘most popular stories’of the day. This is tempered by the need for specialist reporters to maintain credibility with readers and sources.

Researchers have a vested interest in talking up the significance of their research. Coverage in the mass media has been shown to boost an academic research paper’s impact factor. In the highly competitive world of funding applications, media attention can make the difference between an early halt to a promising line of enquiry and completing the work. Axel Ullrich, researcher at the Max Planck institute, told the meeting that in his experience there is now a crisis of trust. “Journalists blame the scientists. They think scientists overhype, and they end up not reporting.”

Boosting impact factors is also important to academic journal editors, who use slick PR machinery to entice the mass media to cover their papers. And research funders have their own vested interest in getting recognition for their contribution.

To this list can be added politicians, and even cancer policy makers. As Cancer Director Richards freely admitted, media recognition helps justify the resources he has been allocated, while coverage critical of cancer services can provide leverage in arguing for organisational change or additional funding.

Pharmaceutical companies are restrained under European law from advertising directly to consumers, so positive editorial coverage becomes all the more important. The sensitivity of share prices to media stories also gives financial players an interest. In a global industry worth around $820 billion in annual sales, and with cancer set to overtake hypertension as the biggest market sector, news stories often break first in the 24-hour news environment of the financial pages. One German science reporter pointed out that, on the recent story about a possible link between the insulin product, Lantus, and cancer, it had been the financial reporters who set the tone, in response to hyped up comments made before publication of the study results by a US doctor with links to firms with competitor products. Had the story first appeared in the health pages, diabetes patients would have received a far more balanced assessment of the findings and been spared unnecessary anxiety.

Finally, patients themselves constitute a vested interest. While they want accurate information, they also yearn for hope.

DO JOURNALISTS GET IT RIGHT?

Writing on topics where many players have an interest in spinning the coverage in one direction or another is what journalism is all about. But how well do they do their job when it comes to cancer?

Ullrich, the researcher, said that those developing new cancer drugs find a lot of media coverage shallow or superficial. “They should describe the reality of cancer research. Patients would feel comforted that scientists are committed to getting results. They would get the message: something is happening in our favour.”

Franco Cavalli, a medical oncologist, suggested that journalists had become more prudent since the extreme overoptimism of the ’70s, but that coverage is now distorted by the huge influence of the pharmaceutical industry.

By contrast, Phil Thomson, head of corporate media at GSK, offered an upbeat assessment. “I believe the quality of media is generally high, but very varied. We have to recognise that the media is a reflection of everyone involved. There are so many stakeholders who talk about data on cancer and have an agenda when talking about that data. The media are reflecting that, not necessarily making it up.”He mentioned a recent story that ran on a 24-hour news channel under the headline ‘The Holy Grail of Cancer Treatment’, which was based on data from a proof-of-concept study. The bulletin did refer to ‘proof of concept’ and said it was an early-stage trial, said Thomson, while the ‘Holy Grail’ headline actually came from the researcher.

Pawel Walewski, a medical journalist from Poland,was more sceptical, pointing out that the agendas of the many stakeholders tend to reinforce one another, rather than cancelling each other out. “There is a huge appetite for breakthroughs. Should we give it to them even if it is preliminary findings in mice and rats or a few late-stage patients? ...How can we reconcile fact-based information with hope?”

This same question was also posed by Kyriakides: “Is there a correct balance between offering hope and dashing hope?” What about the right balance between being too critical and not critical enough, asked Illman. And can the ‘right’ balance in the Frankfurter Allgemeine Zeitung or Le Monde also be right for the tabloid press or indeed the corporate press?

With so many different agendas and interpretations, ‘getting it right’ is not in the gift of a single journalist or news outlet. As GSK’s Thomson suggested, balanced information may be something the public has to seek out for themselves by getting their information from a variety of sources.

A MORAL RESPONSIBILITY?

Richards posed a question to the journalists: “Do you have a moral responsibility for educating the public or for improving outcomes?” And he pointed out that most of the British public remain oblivious to their risk of developing colorectal cancer, while a stream of stories on wonder foods drowns out evidence-based messages on prevention.

Illman made the point that journalists cannot control the results of their stories. “Good journalism can have bad consequences, and bad journalism can have good consequences,” he said.

Journalists do, however, have a responsibility to seek a balance of opinion and to verify their facts. “When writing about alleged breakthroughs, ask not just one but several scientists what they think about it,” said Walewski. But he recognised that deadlines imposed by today’s 24-hour news environment make this a challenge. “Verifying information is a lot harder than communicating information.”

Health and science journalists also have a particular responsibility to reflect the level of evidence behind the data they are reporting. Making stories relevant is another responsibility, which means asking the question: ‘what does this mean for the public or for patients?’

Sensationalist ‘breakthrough’ headlines are poor journalism because they distort the story – often overplaying the immediate significance of a new finding while misrepresenting the incremental process by which cancer treatments are steadily improving. Yet journalists do have a responsibility to present stories in a way their readers, viewers or listeners can relate to – it’s no use telling a generalist audience that a trial is only in phase I if they do not understand what this implies. Kyriakides suggested that sensationalism may be the price for media coverage. “When I started as a cancer advocate, 11 years ago, we were happy to see breast cancer covered at all. Now we expect an awful lot more accuracy and information. Do we need sensationalist reporting? Is it sometimes necessary just to get a story in?”

Above all, journalists have a responsibility to remain independent and transparent. Some freelance journalists accept payment from a company to cover a story, and then tout that story to the press as if they were operating independently. Illman had been on the receiving end of this as health editor of the Guardian. Journalists also need to be vigilant about a lack of transparency in their sources, by posing the right questions, such as: who is funding your research, and where do the data you quote come from?

None of this adds up to a moral responsibility to educate or to improve outcomes. Nor does it constitute a set of rules for finding the perfect balance between hope and dashing hope. Yet it is clear that headlines such as the Express’s ‘ultrasound cure’, and the stream of questionable stories on wonder foods, do constitute a failure of journalism to live up to its own responsibilities.

CAN THE MEDIA DO BETTER?

Though the panel accepted that it is inappropriate and futile to try to dictate to the media, they did offer the following list of ways in which reporting cancer might be improved.

• Distinguish clearly between what is a cure and what is a novelty. 
• Remember that the proof of a new treatment is not in phase I, II or even III trials, but in the clinic. 
• If you must publish poorly supported stories linking particular foods with cancer, balance them by including evidence on what we do know, for instance about tobacco, obesity and the importance of screening.
• Articles about treatments should include guidance to patients. 
• Be quicker and more open to setting the record straight where misleading information has been published.

Were the journalists affronted by these suggestions? They had little reason to be. A quick show of hands at the start of the session showed not one felt the standard of coverage of cancer is currently good. By the end of the session, all of them had hopefully gained a greater understanding about what those engaged in trying to combat cancer would like from the media. The panel too had gained a greater understanding of the responsibilities and conflicting pressures on the journalists who play such a crucial role in communicating about cancer to the public.