Where is the study? Show me the data

Prof Carol-Ann Benn outlines essential factors to assess medical information online.

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You can listen to this article below, or by using your favourite podcast player at pod.link/buddiesforlife

Charlie Brown never gives up, even when he probably should (some cancers when discovered late can be frustratingly complex to manage, and this can drive us to search far and wide for cures). I know I can sometimes be a nuisance and send repeated messages and emails to people who don’t want treatment (just reply and let me know what you decide). 

So, the blonde Charlie Brown in me thought, how about we learn to check the source of our data when researching options for treatments. In short: where is the study? Show me the data.

Is the data legit? Social media and the internet are full of useful or useless advice. I showed my kids that Henry Cavell was the new James Bond and asked whether they had seen the trailer. My kids (much like bossy Lucy) responded with despair, “Mom, that is fake news.” 

How do you and your loved ones work out whether the information you are accessing as a cure is actually that? Is it true that big pharma doesn’t pay for certain studies so that we have to continue paying for their expensive medication? Why is there no funding for publishing data on natural medication? Are we missing out on these cures?

Medical research is difficult

True story, medical research is difficult, rather like Schroeder trying to write his sonata. As he says, “If everyone left me alone I could get it done.” I know this first-hand as publishing in lower middle-income countries is extremely difficult, not dissimilar to publishing on non- mainstream medicines. The amount of times I have sent in an article only to have it rejected, and then to see someone from a reputable non-African country have something almost identical published. This makes me super mad, and I think what is the point of trying to publish?

Well, the point is that you just need to start. Collect your data; create a consent form for patients; apply for ethics and analyse your real-world data. Repeatedly submit and try to publish in reputable journals. 

Turning a fail into a success

A good example of this is the tenacity of Dr V. Craig Jordan. Let’s digress with a story around the first drug to go on the market for breast cancer: tamoxifen. 

Headline news: A failed post-coital contraceptive, ICI 46,474 

ICI 46,474 was not a contraceptive in humans. The drug induced ovulation and could potentially be used as a pro-fertility agent. So, ICI 46,474 was relaunched as a fertility drug. Was this a reason for the baby boom? Imagine a new contraception on the market; free love, hippie lifestyle and eek! failed contraception with now not one but three babies.

At this stage, a very clever scientist Dr V. Craig Jordan noticed that it had an effect on breast cancer. Unfortunately, he had no CV because he had no publications. His mentor gave him the following advice, “Tell them the story so far; each paper should take no longer than two weeks to write-up and link together a series of studies with a theme.” And, voila! Tamoxifen was launched as the first drug to manage breast cancer in 1971.

Complex musical composition

So, Lucy asks Schroeder what the answer to life is and he shouts, “Beethoven it is! Clear and simple.” Well drug research is a bit like complex musical composition.

There is a lot of funded drug development; research involving biotech development, patents, consents, moving drug studies from the Petri dish to the person, from advanced cancer to early stage cancers, and this takes a whole heap of money and time. 

Research studies require consent, data collection, and repeated analysis, and there is no reason why this can’t be done with so-called natural medicines. 

I say so-called as almost everything is either medicinal or poisonous at certain doses, from exercise and oxygen to chemotherapy drugs and cannabis.

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Tips and tricks to evaluate medical information online

Here are tips and tricks for assessing what you read and how you can evaluate medical information online.

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Question the source

Lucy, with her strong opinions and dispensing advice for 5 cents and looking out for her brothers Linus and Rerun, would tell you to question the source. She would tell you to always examine the credentials of the information’s author. If their qualifications are unclear or absent, consider this a warning sign. Confident and strong Lucy would tell, as a powerful women’s rights advocate, to be aware of possible conflicts of interest, especially if the content seems to promote a specific product. In her bossy way she would say, “Such articles often serve as sales pitches, so treat them as such.”

Assess the website’s editorial policy

Linus, the voice of reason amongst his peers, would tell you to assess the website’s editorial policy. Credible health-related websites should generally have a medical editorial board and a clearly defined editorial policy. As a deep thinker, he would suggest that you verify whether the site is from a respected health organisation and whether its content is reviewed by certified medical professionals. Being a student of philosophy, he would end off by reminding you to keep in mind that the internet is unregulated, and anyone can create a site to claim anything.

Evaluate the evidence level  

Sally, Charlie Brown’s sister, being inquisitive would suggest you evaluate the evidence level. Medical claims should be supported by evidence. Demand, like Sally would, the answer by understanding the following: the highest level is a randomised-controlled trial showing improved outcomes compared to existing treatments, known as evidence-based medicine. 

However, because such trials can be expensive and aren’t always available for every condition, there’s also evidence-informed medicine. This approach allows the use of other scientific data, like case studies or laboratory research, when higher-level evidence is lacking. Sally when faced with a question that she can’t answer, with a classical philosophical flippant Who cares? and as we all do, I suggest you understand the above.

Beware of oversimplified narratives

Woodstock is not a great flyer and doesn’t even know what type of bird he is. Much like receiving a cancer diagnosis is undoubtedly challenging, and it’s natural to seek simple solutions. Like Woodstock, you may feel small and inconsequential and should therefore beware of oversimplified narratives. 

Be cautious of authors who make sweeping statements, such as natural therapies are always good or who suggest that healthcare providers are intentionally hiding cures. The universe boggles Woodstock, much like these narratives often ignore the complexities of cancer research and treatment. For instance, some effective chemotherapies are derived from natural sources, while certain natural substances can be harmful. It’s crucial to recognise that dedicated healthcare professionals are committed to improving cancer treatments; there is no one-size-fits-all solution. So, Woodstock knows that Snoopy is the friend of friends; please ensure you have one in the medical field to help you unravel medical narratives. 

Watch for logical fallacies

Pigpen, in his own personal dust cloud, would tell you to watch for logical fallacies. Be mindful that correlation does not imply causation. Like him you need a clear mind and conscience to understand, if someone achieves remission after taking a supplement, it doesn’t mean the supplement caused the remission. Like Pigpen, who has dignity and respect, understand that cancers have natural progression, which can include improvements. 

Additionally, other concurrent treatments might be responsible for any positive changes. Over-extrapolation is also common, implying that results from a specific study or test tube can be applied to all forms of cancer in humans can be misleading. 

While lab findings are significant, they do not always translate to real-life outcomes.

Remember your medical team is there to help

Like Franklin, the busy kid who is always available to help his friends, remember your medical team is there to help. Medical material can be complex and overwhelming. As you review information, jot down any questions or concerns. This way, during your next appointment, you can discuss them with your doctor, who can provide clarity and guidance.

Use the Snopes website

Snoopy’s personality is a little bittersweet and that is why he is your reminder to use websites like snopes.com. This is an excellent way to fact-check information and combat misinformation. Remember like Snoopy is not your average beagle, Snopes offers rigorous investigations into a wide array of claims, from viral social media posts to urban legends, and provides clear explanations based on credible sources and research.

Like Snoopy’s strong personality, check the authenticity of sensational claims, so you can develop a more informed perspective and avoid being misled by false information. 

Additionally, relying on such fact-checking platforms promotes critical thinking and encourages a more discerning approach to the content consumed online.

Like Snoopy, a book lover and writer, collector of fine arts and root beer connoisseur, whether navigating health-related claims or social issues, utilising Snopes can empower you to make well-informed decisions and engage in discussions based on verified facts. Check your data and have Snoopy’s attitude of whether you win or lose; be a disaster or a hero. Face the facts by verifying them irrespective of whether you like the answer to ensure best cancer care. 

Find your Charlie Brown team

Loyal, determined, dedicated and responsible. Ensure the practice or unit where you are undergoing treatment is accredited and that patient data is recorded and reviewed. Most reputable units have a consent form explaining that data will be anonymously collected and reviewed. 

The consent is so that there can be independent review. Is the data around your treatment being recorded and published? Collecting retrospective data and publishing it is the only way we ensure that the information highways have access and provide sensible accurate outcomes review. For example, if your doctor suggests you need a bilateral mastectomy, you can confirm that internationally this is not the first choice on most reputable international medical oncology consensus sites (ASCO, NCCN, SEER, ST Gallen).

Find a Charlie Brown unit lovingly looking after Snoopy; this is how we should care for patients. Kind and patient by nature, wearing our hearts on our sleeves in our bid to help others.