‘There’s nothing empowering for women about sharing misinformation’

One of the most terrifying experiences of my life was when my oldest child was seven months old and she had croup, where the upper airway becomes swollen because of a virus. By the time my mother and I rushed her to the children’s hospital she was in severe respiratory distress and went straight from triage to get the life-saving medication she needed to help her to breathe.

Seven years later, I can still conjure the terror of seeing my baby struggling to breathe.

Anyone can set themselves up as a health influencer, but beware of advice from those unqualified to provide it.Credit:istock

This is why I felt particularly outraged when I saw a company using testimonials from parents to claim that their salt therapy can treat problems with breathing, including children with asthma, croup and bronchiolitis. This is despite a complete lack of evidence that salt therapy has any impact at all on these conditions.

For those of us regulated health practitioners, like doctors, nurses and physiotherapists who are active in sharing health information with the public we have to be incredibly careful how we present information. Due to privacy, we can’t share stories about our patients without their express permission, we can’t claim that our treatments work better than others, we can’t use testimonials, because a testimonial is the experience of only one person and perhaps there were ten others who got no benefit at all.

This is in contrast to the health influencers who have no professional registration and often no qualifications at all, which has created a situation where the least qualified are allowed to give the most outlandish health advice.

I have read influencer Instagram posts claiming that antidepressants don’t work, that the pill can shrink the clitoris and of course the obligatory anti-vaxxers.

The least qualified are allowed to give the most outlandish health advice.

These posts can often sound incredibly convincing, there are scientific terms thrown in, there are small research papers that support their stance, there is certainty and simple ideas, like natural equates to good. It is a simple soloution to a complex problem.

The problem is when people follow non-evidence based health information there are real harms. In a US study, people with early stage cancer who had complementary therapies had a two fold increase in the risk of death, which was attributed to not undertaking conventional therapies, like chemotherapy, radiotherapy and surgery.

Dr Preeya Alexander is a Melbourne GP who has amassed 13,000 followers for her Instagram @thewholesome doctor by sharing accurate, evidence based health information. For this she has received threats to her and her young family’s safety, particularly related to information about vaccination. It’s a sad reality that this deter many health professionals from engaging in this space.

Many health influencers … claim that they want to educate and empower women, but there is nothing empowering about sharing misinformation.

Many health influencers and anti-vaxxers claim that they want to educate and empower women, but there is nothing empowering about sharing misinformation, particularly when it falsely restricts women’s reproductive choices.

When a doctor recommends a treatment to a patient, we talk about side effects. We talk about the fact that it might not work. Medications that have been tested in trials come with factsheets that list potential side effects, even though the reason they have been approved is that in clinical trials the benefits outweigh the risks.

Even as someone who has a science degree, a medical degree and a PhD, it can be very hard to interpret the scientific literature and to understand whether a study has been well-conducted. Terms like inflammation are a shorthand for an incredibly complex process that is essential for life, but can be associated with harm as well. Avoiding "chemicals" can sound like a good thing, if you don’t realise that we and our food are made of chemicals.

Health is complex and simple solutions are attractive. In 2017-2018, many of the research papers that got the most attention were about single lifestyle factors having a small impact. While I do love reading how good coffee is for my health, this takes the focus away from the big contributors to health like not smoking, sleep and regular exercise.

I think that one reason that celebrities and influencers are so powerful in the health sphere is that we equate beauty, thinness and fame with expertise in health. This isn’t trying to improve physical status, this is trying to fit an aspirational lifestyle that is often through money, genetics and some good photography.

One reason celebrities and influencers are so powerful in the health sphere is we equate beauty, thinness and fame with expertise in health.

I started this article with a story, because stories are powerful and engaging, but the reason the nurse at triage knew to send us straight to the resuscitation bay was because of her years of study and experience. The reason the doctor knew which medication to prescribe was because multiple clinical trials have shown that anti-inflammatory steroids reduce the symptoms of croup.

The reason health professionals can’t speak with as much certainty as the average health influencer on Instagram is that we know enough to recognise knowledge gaps, we have enough clinical experience to know that treatment doesn’t always work.

Personally, I don’t want to be held to lower standards for communicating about health and science whether with my patients or with my writing.

In this article I have made a conscious choice not to name particular influencers: I don’t want to drive traffic to their site, and I don’t want to get trolled by their supporters. I also don’t think that they themselves deserve any form of internet pile on. What I would like to see instead is influencers and celebrities being held to higher standards if they want to style themselves as health experts, to make the internet a safer place.

Kate Gregorevic is a Melbourne physician.

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