Can’t Make Head or Tail of Medical Scans? A Canadian Woman Found a Way – National

Kristy Dickinson of Burlington, Ontario, has a rare genetic condition called Ehlers-Danlos syndrome, which can cause her to experience chronic pain throughout her body and frequent dislocations of joints.

For years, she endured the pain without knowing she had the disease. It took seven years to get a diagnosis; while she waited to find out what was wrong, she spent much of her time navigating the medical system and waiting for information to be passed between doctors, as she has 11 specialists in three different hospitals.

“The way my condition manifests for me is in things like joint subluxations and dislocations, unexplained bruising, bleeding, gastrointestinal issues, some heart issues,” Dickinson told Global News. “So unfortunately, because my condition is rare, no one has put all the pieces together and every episode that I have, I’ve been treated by that specialist.”

She struggled to manage her medical records and felt like her care providers were working in isolation from each other.

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Kristy Dickinson says she found it difficult to manage her health data. She felt like many specialists were working in isolation.

Kristy Dickinson

In Canada everyone has the right of access to health information simple, secure and digital. However, according to Health Canada, less than 40 per cent of Canadians report having electronic access to their health information, and only 35 per cent of physicians share patient information outside their practice.

According to Health Canada, delayed access to personal health information is detrimental to patients. It can lead to unnecessary or duplicate testing, longer wait times and hospitalizations, and medication errors.

Dickinson believes this lack of access to health information contributed to her delayed diagnosis. For years, doctors could not explain her persistent pain and stomach problems.

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A stroke of luck came during a visit to a dietician. After describing her symptoms, the dietician suggested that Dickinson consult a geneticist. This advice set the wheels in motion toward her diagnosis and proper care.

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“I don’t think we talk enough about the impact of managing your care. With the way our healthcare system is structured, that burden falls on the patient and the caregiver, especially if you’re someone living with a rare disease or a complex diagnosis,” she explained.

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“I just thought there had to be a better way. Finding PocketHealth was a game-changer.”

Hospitals, primary care providers such as general practitioners, and public health authorities all collect medical information differently and operate using different technologies, standards, and electronic systems that do not communicate with each other. according to a 2021 federal report.

The lack of healthcare data flow makes it harder for patients to get the right treatment, the report said.

A new web-based tool called PocketHealth works with hospitals and laboratories, allowing patients to access and share their images and reports.

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“As a patient, especially if you’re going through a fairly complex care journey, you often feel like a ping-pong ball,” said Rishi Nayyar, co-founder and CEO of PocketHealth.

“You’re jumping from one place to another. Your doctor didn’t get this fax from this place. Your surgeon didn’t get the CD, so you had to take the CD. And when that happens, it often means there’s a delay in care.”

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PocketHealth lets patients type in the name of the hospital or imaging center where their images were taken. They can then log in and access their images, often within minutes, he said.

Because the company partners with hospitals, the system can “quickly enable” hospitals to push out the images, such as MRIs and CTs, as soon as the patient request comes in, Nayyar said.

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And PocketHealth uses artificial intelligence to help read patient data.

“We developed a model that actually gives patients a list of direct questions for when they meet with their doctor, to ask about their radiology report and about their health care in general,” Nayyar said.

The company, headquartered in Toronto, has been around since 2016. According to Nayyar, more than 1.5 million patients now use the platform, which is used by more than 800 hospitals and medical imaging centers in Canada and the United States.

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The platform also offers different levels of service that patients can pay for. The most basic option was recently made free. For patients who want more advanced features, such as storing their information or analyzing their reports in more depth, there is a fee.

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Nayyar added that patients who need access but can’t afford it can call or email and the fee will be waived.

Timothy Caulfield, a Canada Research Chair in health law and policy at the University of Alberta, warned that the type of technology PocketHealth offers could have unintended consequences for the health care system.

“It can lead to overuse. It can lead to anxiety. It can lead to unnecessary visits to your primary care physician,” he told Global News. “And maybe even visits to the emergency room. We’ve seen that with direct-to-consumer genetic testing.”

When a third party enters the healthcare industry, it also means a private company is involved with your medical data, which raises privacy concerns, he added.

However, Caulfield also believes this technology empowers people, as Canadians have the right to access their medical information, including imaging.

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“It can also give you the opportunity to advocate for yourself and in our chaotic health care system, which can be a good thing,” he said. “We have to find a way to balance empowering patients with useful information and not scaring them into thinking they need health care that they don’t need.”

Kristy Dickinson and her family.

Kristy Dickinson

Despite the potential drawbacks, the tool has helped patients like Dickinson save time and fill in the gaps.

“All the fears or potential situations that I’m worried about, I don’t have to spend it trying to be an accurate historian,” she said. “Tools like PocketHealth … if there are times when I can’t advocate for myself or if I’m in an acute situation, I can give them this data on my phone. And that equals continuity of care.”

Katie Dangerfield

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