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    AIWH has the absolute numbers in Australia in the ACIM books:

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    Of 58926 people who were diagnosed with bowel cancer between 1997-2001, 92 people were under 25 (0.16%) and 418 were aged 25-34 (0.71%).

    Of 64829 people who were diagnosed with bowel cancer between 2002-2006, 150 people were aged under 25 (0.23%) and 465 were aged 25-34 (0.72%).

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    Melissa Sweet

    Melissa Sweet

    Thanks Mikaela, much appreciated. Melissa

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    bowel cancer australia

    A data sheet containing the raw data (rates per 100,000) was provided to health reporters at metropolitan papers, AAP and any other news reporters who requested it.

    The analysis of AIHW data was undertaken by two gastroenterologists, covered the three most recent datasets (five-year period each) with an average annual incidence and mortality calculated for each dataset. Age groups analysed were 20-24, 25-29 and 30-34.

    Our release focussed on data from a 15 year period and the complete 20-34yr age bracket to get across the message that being young does not make you immune to bowel cancer. The release also stated Australians aged 50 and over are still the age group that need to be most vigilant as incidence and death from bowel cancer is still much higher in the over 50s than under 50s – a message communicated by our spokespeople too.

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    In my experience, clinicians aren’t wonderful at picking changes in disease incidence and prevalence. There are numerous examples of clinicians reporting alarming increases in disease incidence and prevalence, often in response to public health initiatives, without necessarily having the full story, statistically. For example, there have been reports of a massive rise in rickets attributed to skin cancer campaigns (increasing, but still relatively rare, and largely driven by an increase in dark-skinned immigrants) and eating disorders attributed to obesity campaigns (we know very little about the prevalence of eating disorders in the community, but estimates are in the order of 0.5-1.0% depending on diagnostic vigilance and criteria).

    These observations shouldn’t be ignored – but they certainly require a bit more – often quite simple – investigation before we start panicking the population.

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    Melissa, thanks for your tenacity in parsing the original data on this. I always wonder about the veracity of these health ‘stories’ in the media. And Sleve above has highlighted an issue with the clinicians themselves. Croakey is THE ‘go to’ source for all things health!

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    To be fair to Bowel Cancer Australia, they did provide rates per 100,000 in the media information and some of us did report them in our stories, including the fact that in 2007, only about one per cent of bowel cancer cases in Australia were in the under 35s.
    That said, I don’t think it’s wrong to highlight the fact that people under 35 can develop bowel cancer. I have interviewed people in their twenties with bowel cancer, and their families, who went undiagnosed for months because their doctors thought they were too young to have bowel cancer. If a story about young people with bowel cancer gets one person diagnosed sooner, or prompts someone to go to a doctor with their symptoms, I actually think it’s a good thing. The aim isn’t to create fear. It’s to be informative and get people thinking about bowel cancer symptoms.
    These stories also need to be seen in context. We often write about bowel cancer in the over-50s and the need for a better screening program in Australia. I don’t think an occasional story about bowel cancer in young people negates that.

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    Brett Montgomery

    Thanks, Melissa, for valuing your “informed and engaged audience”. We value the fact that you are informed and engaged too, of course!

    There is another “main take” from this story for me, and that is the value of open data. Without those AIHW data being openly available, we could never have looked at these allegedly “alarming” trends in context. We would have been left struggling to interpret a press release, and scratching our heads. So three cheers for open data!

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    Melissa Sweet

    Melissa Sweet

    Just for the record, I live in a fragile glass house. When critiquing media coverage of health stories, I’m always uncomfortably aware that I’ve made similar errors (whether of omission, fact or emphasis) over the years myself.

    But there has been so much attention, in both the medical and journalism literature, to the problem of simply reporting relative risks (whether in promoting a new treatment or in highlighting a health problem) that these days I think most experts and journalists should be aware of the need to also include some absolute data, to give their audiences some context and perspective.

    Mediadiagnosis, I quite agree that it is fine to highlight that younger people can get bowel cancer – so long as some sort of perspective or context is provided. I’m glad your report did this; but the ones that didn’t risk raising unnecessary alarm, and the potential for people to end up having unnecessary interventions which may cause harm. As the current “less is more” series in Archives of Internal Medicine shows, there is growing recognition within mainstream medicine of the potential harms of unnecessary tests and treatments. We know that media coverage of breast cancer in young women is associated with increases in medical presentations and testing of young women – where the potential harms/costs are likely to outweigh any potential benefits.

    Brett, I absolutely agree about the importance of open data. In the future it would be good to see some collaborations between investigative journalism and open data crunchers. If you’ve any ideas that could be explored this way, don’t hesitate to get in touch. You might also like to check out a new initiative to enable community commissioning and funding of stories, YouCommNews:


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