When Ellyn Winters-Robinson was diagnosed with breast cancer in March of 2022, she was "devastated and traumatized."
Ahead of her diagnosis, the Ontarian had to wait four week for a biopsy, she told Yahoo Canada.
"I've never been so anxious in my life, so you go to Google because that's such an available and free place to go and learn more," Winters-Robinson, co-creator of AskEllyn, recalled.
She was one among a growing number of Canadians who rely on search engines to understand more about their health.
According to new data by Breast Cancer Canada (BCC) released on Wednesday, nearly three in four Canadians (73 per cent) turn to search engines like Google after receiving a diagnosis from their doctor. Kimberly Carson, CEO of BCC, said in the release this "can expose patients and their families to inaccurate and misleading information."
You start to read things on the internet and leap to conclusions.Ellyn Winters-Robinson
Having learned from personal experience, Winters-Robinson pointed out it can also expose patients to a heightened sense of anxiety and emotional distress.
"I haven't met one woman yet that has had an identical journey with breast cancer, so the risk is: you start to read things on the internet and leap to conclusions and apply your own interpretations on this information that just really amp up your anxiety," she said.
Why are Canadians turning to search engines for diagnosis?
Dr. Eric Cadesky, a family physician and chief medical officer for Seymour Health in Vancouver, B.C., says it has to do with access to primary care. He explained millions of Canadians without family doctors don't have someone they can turn to for advice. That's why they end up looking for information on Google.
"Of those who are lucky enough to have a family doctor, fewer than half can actually see that doctor or contact them on the same day. So we have a situation where people cannot get timely access to information from a trusted source," Cadesky said.
According to a national survey released by OurCare.ca in April 2023, more than one in five Canadians — an estimated 6.5 million people — do not have a family physician or nurse practitioner they see regularly.
Cadesky also said people understand how overburdened doctors are and feel that they don't want to be a bother. "In an age where information is available 24-7, it's easy for people to go online to access information."
But, the doctor warned, this information can be unreliable.
What sources can Canadians rely on for information?
Cadesky recommended Canadians reach out to their trusted healthcare professional, if they have one, for reliable information regarding their diagnosis.
"One of the silver linings of the pandemic is a widespread adoption of telehealth, whether that be people being able to call their doctor, or to text their doctor," Cadesky claimed.
He said it's also fine if patients are doing their own research about their diagnosis as long as they don't accept the sources as truth. "That way when they come to see me, they can have their questions," Cadesky said.
When sharing a diagnosis with a patient, Cadesky said he and many of his colleagues send trusted information to their patients, so they'll have a better understanding of their diagnosis and potential treatment.
"The journey does not end with the diagnosis; it's just the start of another journey. And so any journey with respect to health has to be fueled by good information," the doctor added.
New resource for breast cancer patients in Canada
A new source of information available to breast cancer patients is Progress CONNECT — a breast cancer information portal launched by BCC on Wednesday. It provides individuals with personalized reports based on their type and stage of breast cancer.
The portal was created in response to new data conducted among members of the Angus Reid Forum showing more Canadians are turning to search engines.
"With over 50 different types of breast cancer, understanding personalized management options is crucial," said BCC's Kimberly Carson in the release.
Winters-Robinson has also created a similar tool that was launched in October of 2023 called AskEllyn.
AskEllyn, a conversational AI tool based on Winters-Robinson's book "Flat Please. Hold The shame," was designed to support people navigating the complexities of breast cancer.
To help with patients' anxiety, Winters-Robinson said the free tool is non-judgemental and empathic, providing not just information, but emotional support that a patient might not be getting from family or doctors.
"The healthcare system is wonderful. Don't get me wrong, I had great care. But there's not a lot of emotional support for people when they're going through a diagnosis," Winters-Robinson said. "Doctors don't have any lived experience with breast cancer."
Going to Google and getting overwhelmed in an early stage is probably the worst thing that you can do.Ellyn Winters-Robinson
When Winters-Robinson was feeling anxious about getting a lung scan, she went and asked the AI tool for advice and that conversation helped calm her down.
"Going to Google and getting overwhelmed in an early stage is probably the worst thing that you can do because your brain is going a thousand different directions and it's always going to be the worst case scenario," she claimed.
"You do need that comforting friend, (be it an AI or something else), to say, 'no matter what it's going to be, we're going get through this together.'"