Too many patients relying on the internet to diagnose and treat medical conditions with results that are predictably worse than the original condition, says Ontario Medical Association
Ontario doctors are speaking out about their concerns that many patients are seeking solutions to their medical problems by going to the internet.
Dr. Zainab Abdurrahman, president of the Ontario Medical Association (OMA), hosted an online media briefing this week to caution Ontario residents about the problem of people trying Do-It-Yourself (DIY) medicine.
Abdurrahman said there could be many valid reasons why people feel pressured “to take health into their own hands” with do-it-yourself treatments or remedies when they have a medical concern.
This could include the lack of access to a physician or even a lack of trust in the medical profession, based on previous transgressions, she said.
There are consequences and people need to be better informed, she said.
“The treatments may not actually help alleviate the symptoms that they’re looking for help on, or help with the disease or prevent a certain disease, or worse they could cause unnecessary harms or prolong symptoms or prolong them from actually getting the care they need.” she said. She said it makes sense that patients want to help when they’re sick and are eager to heal.
Abdurrahman said patients who do research on the internet could easily be overloaded with information from a range of sources.
She said some of the sources may not be reliable or up to date. She said many diseases require specialist care. She said patients may not recognize which information is correct for their particular condition.
Abdurrahman said Ontario’s medical system has the experts people need to recognize unusual conditions.
“And we wish to share our expertise to help people heal,” said Abdurrahman.
Joining in on the briefing was Dr. Valerie Primeau, a psychiatrist in North Bay who is the medical director of psychiatry, mental health and addictions at the North Bay Regional Health Centre.
Primeau commented on the “rising trend of self-diagnosis” especially in terms of mental health.
She said in many cases she meets parents who have a child who was clinically diagnosed with ADHD (Attention deficit hyperactivity disorder) or Autism and they wonder if they as a parent have the same disorder because they saw a video on TikTok.
Primeau said people reach out because there are barriers to mental health, long wait times and people are left thinking there is something wrong with them. She said some online commenters are health care providers, but many are not.
Primeau said there are some online tests that actually charge money to let people know if they have ADHD, for instance. She said such tests are not known to be accurate.
She said ADHD is one of the most common conditions for self-testing online.
“I wanted to talk about the potential risks of using these self-diagnostic tools or watching videos and diagnosing yourself based on the impression of someone providing information online,” she said.
“And the first concern obviously is misdiagnosis. And there are certain disorders that are high risk or misdiagnosis, specifically bipolar disorder for example. Studies have been shown that it is not very accurate to do a self-diagnosis when it comes to that illness,” said Primeau.
“When studies have looked at videos on social media, a lot of them are overly generalized, meaning they don’t target a particular disorder, even though they say they do. They may inaccurately portray certain illnesses, or provide misleading information.”
Primeau said people who think they have a mental illness will obviously display anxiety about it, even though they do not have that disorder.
“So that can be dangerous,” she said.
To make things worse, patients may be given unfiltered advice on how to manage that illness, which is not likely to be evidence-based.
She said some people will try self-treatment which can include trying the medication prescribed to a friend or family member who has the same symptoms.
“So that can be dangerous as well,” she said.
Another issue is that the internet does not provide the privacy or security that patients should have when providing information on their mental health.
Dr. Alyse Goldberg, an Endocrinology and Metabolism specialist in Toronto. She said she works with many patients who are trying to get pregnant, some with hormonal and reproductive issues.
She said many patients are targeted or involved with hormone discussions on social media.
Goldberg said many patients are bombarded on social media by discussions of what is happening to their bodies and in some cases patients are told to avoid some evidence-based treatment being suggested by their physicians.
She said in some cases, patients are advised to try “tea supplements.”
She said some patients have had poor relationships with their doctors because the doctor did not recommend the special tea to help their hormonal imbalance.
She said she has been confronted by patients who suggested she was “withholding treatments” because she did not prescribe a certain advertised non-medical product.
“So I can only imagine what people who are not feeling their best, searching their symptoms specifically, will be given and what additional recommendations that they will seek out, which could potentially delay in worst cases harm their care, harm themselves and potentially be exploited,” she said.
Goldberg said she and her colleagues have found that internet advertising tends to avoid real medical advice and tends to suggest that all the ailments can be easily resolved with certain dietary supplements.
The briefing also heard comments from Dr. David D’Souza, a radiation oncologist from London, Ontario. He said he treats patients who are diagnosed with cancer, and most are referrals from other physicians.
D’Souza said many of his patients are scared and overwhelmed with their diagnosis “and they are looking for hope.”
He said Canadian Cancer Society statistics show more than 60 per cent of cancer patients are still alive after five years.
D’Souza said it also shows that many patients do not do well and so it results in patients just wondering and imagining the worst.
He said it is only natural for people to seek out information wherever they can, and that is usually the internet and social media.
People might be tempted to latch onto “all-natural” treatments “that come with very few or no unpleasant side effects, or they offer miraculous outcomes.”
D’Souza said studies done in 2018 and 2019 looked at online advertisements about cancer treatments. He said a third of the postings had false, inaccurate or misleading information.
“You might say well, what’s the big deal, what’s the problem with it?” asked D’Souza.
“Well most of them are potentially harmful,” he said.
To make things worse, D’Souza said he has had patients who refused real medical treatments for curable cancers and decided to try other solutions.
He said in one case, the passage of time just made the cancer worse.
That said, D’Souza commented that social media is a real thing and doctors need to understand that people can be driven by fear to find solutions but the doctors have to work with their patients to build trust.
Len Gillis covers mining and health care for Sudbury.com.