Ontario doctors alarmed by the rise of 'DIY medicine'

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Patients are increasingly diagnosing and even treating themselves based on online advice, a trend that is raising alarm bells among Ontario doctors.

The Ontario Medical Association held a briefing this past week to warn about the rise of so-called DIY medicine, something doctors say is causing harm to patients and is likely to get worse.

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Earlier this year, the Canadian Medical Association reported results of a media survey that found more Canadians are turning to social media for medical advice at a time when many are struggling to access health care.

The survey found that 62 per cent of Canadians had encountered health information they later found to be false or misleading — up eight per cent from a year earlier. Twenty-three per cent of those surveyed reported having a negative health reaction after following online health advice.

It is a trend that Ontario doctors see on a regular basis.

“In my experience, one patient out of three will bring up some form of self-diagnosis,” said Dr. Valerie Primeau, a psychiatrist from North Bay who leads inpatient and community programs for mental health and addictions.

Among common self-diagnoses is attention deficit hyperactivity disorder, something that is a rising focus of social-media posts.

“People are looking for answers, and the internet is willing to provide those answers,” Primeau said.

Primeau and other physicians taking part in the briefing acknowledged there are many reasons patients are increasingly looking to the internet for answers to their health questions — a lack of access to medical care and the growing reliance on the internet among them.

She encourages her patients to talk to her about what they have read and seen.

“It can provide validation and a sense of community. It is important to take it into account if a patient brings it to your office, but I never encourage anyone to self-diagnose.”

Dr. David D’Souza a radiation oncologist in London who leads clinical research into image-based treatments for cancer, said information and misinformation patients found online were routine parts of his practice.

He has treated patients whose health suffered because of their reliance on information they saw on the internet, he said.

One patient who had been diagnosed with cervical cancer declined conventional treatment because she wanted to pursue other remedies she had learned about through the internet, he said. Two years later, he saw her again and her disease had spread. “Our ability to control it and give her a good outcome was severely compromised.”

Another patient diagnosed with cancer chose treatments, including ivermectin, an anti-parasite drug that became popular as an alternative treatment for COVID-19, for which it was ineffective.

Health officials in the United States have raised concerns about its alternative use by patients to treat cancer. There is no credible evidence that it works. However, it can cause harm and delay effective treatment, allowing cancer to spread.

D’Souza said he understood why people turned to the internet when they received a diagnosis like cancer.

“We know people are going online. Looking isn’t necessarily the problem.”

He noted that there was a big difference between looking up a YouTube video to learn how to fix a broken appliance and looking up advice about how to DIY your health care after a diagnosis of cancer.

“If you go down the wrong path, it can cause harm.”

But he said it was important not to judge patients and to engage with them about their concerns, especially at a time when they may feel they have little control over what is happening to them.

“Rather than being judgmental, I embrace the fact that they are communicating.”

Dr. Alyse Goldberg, an endocrinologist from Toronto who focuses on fertility and treating hormonal conditions, said there was a “plethora” of advice on the internet from influencers and others about hormonal and fertility issues, often focused on untested approaches and supplements that promise simple solutions to what are complex issues.

She said she focused on having open conversations with patients and trying to explain what had been shown to work in research studies, “emphasizing that we are all in this together to try to help our patients feel better and prevent complications.”

OMA president Dr. Zainab Abdurrahman said poor access to primary care played a role in the growing trend toward DIY medicine.

“Being able to ask these questions (about your health) is about trust. One place you have trust is with your family doctor,” she said. “When you don’t have that, people often go to other sources.”

She said that was why the OMA is advocating for every Ontario resident to have access to a primary caregiver, something the Ontario government has committed to doing.

The physicians said it was difficult to cut through the growing number of influencers and health advisers online, many of whom look to make money from people seeking medical help.

But they said there were credible sources, including major research hospitals and organizations, including the Canadian Mental Health Association, the Canadian Cancer Society and, CAMH.

They said they were raising their concerns because they believed the situation was getting worse, especially with the rapid growth of artificial intelligence.

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