Risky DIY medicine on the rise as patients turn to Internet for quick answers, Ontario doctors warn
'We know people are going online,' Dr. David D'Souza said. 'The aspect of looking is not necessarily a problem; it's the interpretation of it.'
D'Souza, a radiation oncologist in London, Ont., said patients are often drawn to ideas that seem 'all natural' or that seem to offer 'miraculous' results or options with no unpleasant side effects. He cited a study which found that about a third of the most popular social media posts about cancer from 2018-2019 contained factually incorrect information.
'You might say, well, what's the big deal? What's the problem with it? Well, most of them are potentially harmful,' he said.
D'Souza was one of several doctors who took part in a news conference hosted by the OMA Wednesday, calling attention to the rising trend of do-it-yourself medical solutions.
Doctors on the panel said they are increasingly encountering self-diagnoses based on internet research or having to answer questions from patients about viral videos suggesting that fast food can cure migraines or that CBD oil can shrink tumours.
Some are even trying to treat themselves.
'I had a patient who had a tube going into their kidney because it was blocked – it's called a nephrostomy tube – due to their cancer. And they actually tried to put the twine from a weed whacker in to get out the sludge that was in there,' D'Souza recalled. 'They were asking about actually putting in a little bit of Lysol to clear it out.'
While he managed to dissuade them, other patients have chosen to go with alternate treatments based on their own research, sometimes with devastating effects.
One young woman, D'Souza recalled, came to him with a diagnosis of cervical cancer.
'She was not ready to accept conventional treatment and decided she was going to pursue other remedies that she had heard about,' D'Souza said. 'She came back two years later, unfortunately, with her disease having progressed and spread, and in a lot of pain, and unfortunately, our ability to control her cancer and give her a long-term good outcome was severely compromised.'
Patients making diagnoses with online quizzes
Dr. Valerie Primeau, a psychiatrist from North Bay, Ont., said she's seeing more and more people using quick online tools to diagnose themselves with Attention Deficit/ Hyperactivity Disorder (ADHD), bipolar disorder, and other problems.
'The first concern, obviously, is misdiagnosis,' Primeau said. 'And there's certain disorders that are higher risk of misdiagnosis, specifically bipolar disorder.'
She noted that if you think you have an illness, that could increase anxiety about having an illness, which could itself have negative health impacts. Best practices around treatment can also change dramatically in just the space of a couple of years, she said, information that medical experts are more likely to be appraised of than online resources.
'So that can be dangerous, as well as being given unfiltered advice about how to manage the illness, which is not likely to be evidence-based,' Primeau said.
She estimated around a third of the patients she sees come to her with self-diagnoses and estimates that proportion will increase.
'It's happening more right now, and I foresee it continuing to happen more and more, especially with AI technology getting more and more available and more and more sophisticated,' Primeau said. 'I have patients now that talk to ChatGPT to get advice.'
Social media a source of medical misinformation
Dr. Alyse Goldberg, a Toronto endocrinologist who focuses on fertility and treating hormonal conditions, said existing technologies, particularly social media, are already driving people to health information that may not be reliable.
She showed examples of posts, presented to her by social media accounts she doesn't even follow, which described 'invisible signs of Polycystic Ovary Syndrome (PCOS)' and 'tips' about other disorders she regularly discusses.
'You get targeted in terms of what therapeutic options your physician may be giving you, but then reasons to avoid some evidence-based treatment,' Goldberg said.
While some of the solutions presented by the posts might sound amazing, they may not be tested or evidence-based.
Nevertheless, seeing the posts could 'fracture the relationship with the physician,' Goldberg said, especially if the patient feels that good options have been 'withheld.'
Some of the posts might also push users toward products that aren't effective or appropriate and Goldberg said it's important to think about 'who's trying to make money off of us and use our symptoms of medical experiences in order to self promote.'
OMA President Dr. Zainab Abdurrahman said the organization is particularly concerned about the rise in diagnosis and self-treatment among young people, who tend to lean heavily on information from the Internet.
'When you break it down by generations, we're also seeing a higher uptake, especially in some of our very young populations, who are still in their teens and early 20s, who are looking more at social media and in terms of how they quantify how reliable or credible a source is versus other generations,' Abdurrahman said.
She also pointed out that combatting misinformation is a wider problem society is grappling with right now.
'We want to come and address and talk about this, and talk about how to get credible information, because we know misinformation and disinformation is something that, as a society we are managing, and health-care is not immune to this.'
While there are many pitfalls and problems with self-diagnosis and treatment, doctors point out that it can be beneficial to do some research from legitimate sources if it leads you to consult a physician who can more accurately diagnose a problem.
The doctors also stress that it's important for medical professionals to be communicative with their patients rather than judgmental, recognizing that sometimes a prescribed course of treatment can leave patients feeling like they don't have control.
'Rather than coming back with a judgmental tone, I embrace the fact that they are communicating,' D'Souza said.
They also acknowledge that access to family doctors, and financial barriers to certain kinds of medical tests and assessments could also be driving people into the arms of Dr. Google, where quick answers are easy to come by.
'Our phones now are intelligent. They listen to us and they look at our trends,' Primeau points out. 'And if we talk about something that we're concerned about, they will show us posts that relate to that. So the answers seem more immediate, and people want that. People are looking for answers, and they get that validation from that access on social media.'
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