Attitudes and beliefs about cancer – can journalists make a difference?

How do people form their attitudes and beliefs about cancer? This is a topic that in some societies is difficult even to mention – as if talking about cancer made it more likely to strike.

Many think of it as a death sentence, although 1 in 50 Europeans is in fact living with cancer or in remission. Some people believe strongly that taking exercise or eating organic food will stop them getting cancer, or cure it, if it occurs. Others believe there is nothing modern medicine cannot deal with, and that patients will not die if they get the latest treatment at the best centres, and have a positive attitude.

Where do these ideas come from? Like all beliefs they are complex and derive from a number of sources. But media surely play a defining role in how society relates to significant disease.

On the one side is lifestyle journalism, where we can find features assuring us that kiwi fruit “repair damage to our DNA” or that potatoes “inhibit tumour growth”. On the other side we have serious science journalism, which often assures us we are close to understanding (and combating) the causes of cancer, but does not warn its readers that advances in basic science can take decades to result in improvements for patients – if at all.

With cancer, we know that there are large variations in the five-year survival rates not just globally, but across Europe, and even within individual countries. The differences seem to be related not to the quality of our kiwi fruit, or even the quality of our doctors, but perhaps to organisation of cancer services, a topic that is low down on the excitement scale for news editors.

You would think that at least the media was good at explaining things. In 2007 the Swiss Health Literacy Survey showed that magazines and newspapers were the top source of information for health (46%) followed by doctors (general practitioners) (33%) and the Internet (31%). However, while doctors scored well for being easy to understand, only one in four people found information about health in the media or on the Internet easy to understand.

This is especially difficult for cancer, which is not one disease but more than 200, and for which there are multiple causes and multiple treatments. Many cancers can be prevented – most cannot. Others can be cured if caught early – but screening for cancers has its own problems and is possible only in a few cancer types. Even where a cancer is not entirely cured it is possible for people to have many years of active life living with the disease. Some cancers, lung cancer and certain brain tumours among them, still have a very poor prognosis.

Journalists writing about cancer need access to good information, and to a range of sources. They also, in our view, need to go beyond purely scientific and medical stories to look at how cancer affects different people and families. Elderly cancer patients may be denied their best chance for a cure because of assumptions about treatments they can tolerate, or even a feeling that it is a waste of resources to treat the very old. Some survivors live damaged lives and feel they were panicked into accepting treatments that did more harm than good. Newly diagnosed patients may struggle to find out about the treatment options and centres that would give them the best chance of surviving with their quality of life intact. Perhaps the least told story is about the growing proportion of our populations who are living with cancer – the good news about survival and being able to live an everyday life, and the less good news about stigma and discrimination from employers, bankers, insurance brokers and sometimes even friends and colleagues.

These are human interest stories and they need all the usual qualities of good reporting, plus a willingness sometimes to challenge the way that services are provided. Should there be fewer but more specialist cancer centres? Should patients have better access to information about the quality of different cancer services? Why are many cancer patients still suffering in pain, when good quality drugs are cheap and effective? Should more be done to help patients get back to their normal lives after treatment has ended?

There are many examples of good reporting – the Best Cancer Reporter Award made every year by the European School of Oncology (ESO), struggles to choose a winner from the large number of journalists who give their readers rational and balanced coverage of this important range of diseases.

But there are also journalists for whom strong beliefs replace objective inquiry. At one event where we were present, one journalist suggested that Yemeni men had high levels of smoking but almost no cases of lung cancer, and attributed this to their being “the most ethnically pure Arabs”. An epidemiologist pointed out that in fact Yemen has no national cancer registry and was therefore not recording the number of cases of lung cancer, which were, according to data he had seen, “very high”.

As Ben Goldacre points out in his book, Bad Science, some of the doubtful health claims that do the most damage exist at a purely national level. In the UK, childhood immunisation against mumps, measles and rubella, fell dangerously after (insubstantial) research claiming that the combined MMR vaccine led to autism was widely promoted in the media. In the 1990s there was a health scare in France that the Hepatitis B vaccine caused multiple sclerosis. Neither of these scares caused a ripple beyond their national borders. No doubt journalists attending the WCSJ will have examples from their own countries.

Once a scientific (or quasi-scientific) theory is adopted as editorial policy then it becomes very difficult for the public to know what is real and what is hype.

We are journalists because we want to go beyond what “everyone knows” and find out things that people do not know, but might be better off for knowing. The need for good reporting is growing. Most cases of cancer by 2020 will not be in the affluent west but in low and middle income countries, and the incidence of cancer becomes more common as people live longer.

How do we try to make our journalism both interesting and informative and something that really makes a difference? How do we convince our newsrooms that the evidence-based journalism can also be good and lively journalism? And how do we find and evaluate the evidence ourselves? This is what we hope to explore in our skills building workshop on Tuesday 30 June in Westminster Hall (starting at 9.30am). To make this session work, we need your experience and your input. If you would like to register for the workshop e-mail julie.clayton@wcsj2009.org

Anna Wagstaff and Peter McIntyre

(Anna and Peter both write for Cancer World magazine published by ESO)