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 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.
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 have 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,” she 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 is a routine part 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 U.S. 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 understands why people turn to the internet when they get a diagnosis like cancer.
“We know people are going online. Looking isn’t necessarily the problem.”
He noted that there is 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 is 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 is 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 focuses on having open conversations with patients and trying to explain what has 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 plays 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. When you don’t have that, people often go to other sources.”
She said that is 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 is difficult to cut through the growing number of influencers and health advisers online, many of whom are looking to make money from people seeking medical help.
But they said there are credible sources, including major research hospitals and organizations, including the
Canadian Mental Health Association
, the
Canadian Cancer Society
and,
CAMH
.
They said they are raising their concerns because they believe the situation is getting worse, especially with the rapid growth of artificial intelligence.
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