As a professional who develops clinical practice guidelines and healthcare standards, one would assume Sarah Burke Dimitrova is able to navigate Ontario’s healthcare system with ease. Sarah herself was once convinced she knew what it took to get proper care. It wasn’t until she and her husband began experiencing infertility while trying to conceive a child did the gaps in her care begin to appear. Gaps that, despite her knowledge and experience, Sarah struggled to bridge on her own.

Sarah is a healthy, 31-year-old woman living in Toronto. For the past two years, she and her husband have been relentless in their efforts to conceive a child, with little luck. After a year of failed pregnancy attempts, and at the recommendation of their trusted family doctor, they decided to enlist the support of fertility specialists, of which there are many in the Greater Toronto Area.

“We’re very lucky in Toronto to have the most fertility clinics per capita in Canada,” Sarah says. “Vancouver only has three — Toronto and the surrounding area has at least 15.”

Yet despite this unparalleled level of availability, it took months to get a referral appointment. In the meantime, Sarah proactively took matters into her own hands and self-referred to another fertility clinic. In February 2018, the couple had their first appointment.

Diagnostic testing unveiled little. “Nobody has used the words ‘unexplained infertility’ with us,” Sarah says. “But that’s the category we fall under.”

As a woman who has thrived off of access to information, having received a Bachelor’s Degree in Communications and then a Masters in Public Health from Johns Hopkins University, this lack of insight was frustrating, and the lack of answers disheartening.

“Our doctor told us that we were young and healthy, and that there wasn’t much to worry about,” Sarah explains. But his answer, albeit aimed at alleviating the couple’s concerns, didn’t mesh with the sense of urgency Sarah felt and only made things worse.

“It felt like there was gatekeeping around information and decision-making with regards to what was happening, and what was an appropriate next step. It felt like the doctor had to put effort into saying it was my decision what to do next. I wasn’t comfortable with it.”

This feeling, as if there’s a metaphorical wall between the patient and provider, is common. The stress and intimidation associated with this information asymmetry is what Sarah explains as a phenomenon known as the ‘white coat syndrome,’ which many patients feel when interacting with their health care providers.

“I really feel the power differential, despite being a woman who is highly educated, working in the healthcare field, with my husband beside me, who’s also educated.” Sarah admits. “If we feel disempowered, I can’t imagine how someone coming from a different language or educational background, whose health literacy is low, must feel.”

From these language and knowledge barriers to low-tech EMRs (electronic medical records), our healthcare system is riddled with opportunities for inadequate communication. When it comes to fertility journeys in particular, which require frequent appointments, medication adjustments, tests, and updates from multiple providers, the risk of not getting all of the information you need is higher.

“Many providers don’t see the value in people having their information,” Sarah explains. “They think people will get stressed if they see results, and in some cases, they’re right — some people don’t want to see everything. In my case, when every test result determines what I need to do next, sometimes even that same day, it’s crucial for me to know everything.”

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“Providers don’t see the value in people having their information”

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Providers will engage patients in shared decision-making regarding courses of treatment, or end-of-life decisions. In a similar vein, patient-centered care should also involve empowering patients to access and understand their personal health information, as well as determining how much information they want access to. Sarah has now set expectations across the board with her providers, letting them know the precise level of detail she wants — and has a fundamental right — to know.

“Health care professionals use objective tools to tell me what’s going on in my body, through things like ultrasounds and blood work, since I unfortunately can’t do it on my own. But really it’s my information that I choose to have them interpret for me,” Sarah says. “There are some people we still need to convince that it’s our data, which means we deserve access to everything.”

Sarah points out that it’s critical for all patients to play active roles in their health care. From taking medications to treat a chronic condition like heart disease or diabetes, to taking antibiotics to cure an infection, there’s often some level of self-management. Sarah fiercely believes that in order to do it well, we need easy access to our health data.

The motivation to access her information and act in accordance with what it reveals comes naturally to Sarah, a passionate health communications professional. But she recognizes that for others, especially those who feel intimidated by medical jargon, it can feel impossible. “There isn’t always that space where patients are encouraged by providers to be thoughtful and curious about their care plan,” she says. “There needs to be more room for making sure everyone understands what’s being done, how, why, and what to expect, without it being patients’ responsibility to explicitly ask.”

Soon, Sarah and her husband will begin a new chapter in their fertility journey and undergo in vitro fertilisation. With this will come a host of new procedures, tests, and information, leaving Sarah wondering: How much more am I going to need to think about and ask in order to get the information I need — and deserve — to know?

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Follow along with Sarah and her husband’s fertility journey on Instagram.

This is part of Dot Health’s #HealthStories series, where we highlight individuals from across Canada and their experience with the healthcare system in Canada as a patient, caregiver, or advocate.

Dot Health is a Toronto-based digital health company that believes health information belongs in the hands of its owner: you. Through our web andmobile app, we empower Canadians to own and control their health data, from clinics, hospitals, labs, and pharmacies.