What lies behind the headlines?
There are two words which appear regularly on the search engine terms on this blog – “information overload”. Google directs searchers to the post can you have too much information which explores the question of how much is enough when it comes to patient information.
The post highlights the case of Helen Osborne, who always believed in the power of information, but started to question this belief when she was diagnosed with early-stage breast cancer.
I found that I would get more confused and overwhelmed when I read a lot of articles about research or looked at many websites for patients. I also found that new information often raised my level of anxiety as I would zero in on the worst possible outcome and be certain that it would happen to me.
Another concern with the sheer volume of online information, is that of how we filter out the good, the bad and the down-right dangerous. Hardly a week passes without us being bombarded by scare stories in the media or at the other end of the spectrum, what can save us from cancer. The problem with this kind of sensationalist reporting is that people’s risk perception becomes skewed and they will start to tune out the real message behind these unbalanced reports.
Ben Goldacre, writing in Bad Science, classifies science reporting as falling into three categories – wacky stories, scare stories and “breakthrough” stories, the last of which he views as “a more subtly destructive category of science story”.
Goldacre makes the point that frequently a front page science story will emerge from a press release, often written by a press officer, with a non-science background, writing with a lay audience in mind. “Scientists never said that tenuous small new findings were important headline news – journalists did.” he concludes.
So how do we separate the truth from the misinformation that abounds in cyber-space? I am lucky enough to be married to a scientist, who I run “break-through” stories past, before I publish them on the blog. In addition, I work for a breast cancer charity with access to the latest medical reasearch and a team of medical professionals to interpret the data for us. I guess my point here is that we need to dig a little deeper behind the newspaper headlines to find the source.
The American Cancer Society says you should ask yourself these questions when reading an article:
- Was this a press release from a company announcing a new breakthrough in cancer prevention?
- Was it a report from a clinical study that was given at a scientific conference?
- Was it a report from a study that was published in a respected medical journal?
- Where was the study done? What do you know about the research centers that conducted and sponsored the study?
Echoing Ben Goldacre, the M.D. Anderson Cancer Center make it clear in a recent online article that “headlines often mislead people into thinking a substance (food, drug, vitamin) or activity has been proven beyond a shadow of a doubt to prevent cancer when really it hasn’t.”
Their advice?
Don’t be misled. Read the original study report, and look for details about the research done to support this new theory. Often these tests will not have been tried on humans yet. What works in animals does not always have the same effect on people. In fact, it can even turn out to be harmful. Wait for researchers to learn more before giving it a try. If a news report is about a study involving people, this is a good sign. It means the new substance or method probably has successfully passed lab and animal studies. But, even human studies must go through several phases before a substance or method can be considered safe and effective. Human studies usually begin among small groups of people to determine effectiveness before testing in larger groups.
The web is changing the way people are assessing their own healthcare needs and information, and has led to the rise of the “e-patient”. However, we need to do our research with care and it is clear that we still need to draw on the expertise of scientists and physicians to help us delve beneath the headlines, weigh up the information, and filter out the correct information from the increasing amount of noise patients find online.
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A timely article with some great advice.
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A must read for any e-patient!
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Another great post Marie
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Nice post Marie. I’ve become very skeptical lately of lots of science and medicine stories that predict breakthroughs in this and that.
In my opinion, if you stand still long enough, one newspaper in particular, will announce you as a cure for or a cause of cancer.
I imagine this can be particularly upsetting for individuals and their families who are looking for some sort of ‘cure’. I’m inclined to agree with Goldacre; the language of science never claims to have cured cancer or made such breakthroughs. The spin and emphasis (often misplaced) seems to be added later by PR and news media.
A clearer understanding of how science works (i.e. clinical trials, statistical significance, etc.) is needed if the general public are to make sense of the claims being thrown in their daily newspapers.
Eoin
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thanks Eoin for your enlightening comment – i was curious to know what you made of this and glad to hear you are in agreement with the main points of this post. Marie
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Marie,
Very nice and informative post. Yesterday, I was reading an article that stated chemotherapy wasn’t effective on my type of cancer–good thing that I have had done the research through repetuable resources or I would have wasted a day in tears and distress. Knowledge is powerful, if it is factual. Thanks again for helping to bring awareness and truth!
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I know exactly what you mean Kim about wasting a day in tears and distress. When I was first diagnosed with breast cancer, I spent many days in tears reading about what was lying in wait for me on the cancer journey. It is hard to tell someone who is in shock and desperately looking for information, not to believe everything they read, but as you so rightly say, knowledge is only good of it’s factual! Thanks for taking the time to comment – I always love to read your views 🙂
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Top class, well researched post as usual Marie.
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Thanks Martine 🙂
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Knowledge is powerful, if it is factual- that pretty much sums it all up for me Kim! Well said!
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