Kristy Dickinson, from Burlington, Ont., lives with a rare genetic disorder called Ehlers-Danlos syndrome, where her whole body can experience chronic pain and frequent joint dislocations.
For years, she endured the pain without knowing she had the disease. It took seven years to get a diagnosis; while waiting to find out what was wrong, she spent much of her time navigating the medical system and standing by for information to be passed between doctors, as she has 11 specialists across three different hospitals.
“The way that my disease presents in me is in things like joint subluxation and dislocations, unexplained bruising, bleeding, GI issues, some cardiac issues,” Dickinson told Global News. “So unfortunately, because my condition is rare, no one put all of the pieces together and I was treated with each episode that I had just by that specialist.”
She struggled to manage all her health records and felt that her care providers were working in silos.
Kristy Dickinson says it was difficult managing her health data and felt many specialists she saw worked in silos.
Kristy Dickinson
In Canada, everyone has the right to access health information simply, securely and digitally. 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.
Delayed access to personal health information causes harm to patients; it can result in unnecessary or duplicative tests, longer wait times and hospital stays and medication errors, Health Canada stated.
Dickinson believes that this lack of access to health information contributed to her delayed diagnosis. For years, doctors could not explain her persistent pain and stomach issues.
A stroke of luck came during a visit to a dietitian. After detailing her symptoms, the dietitian suggested Dickinson see a geneticist. This advice set the wheels in motion towards her diagnosis and proper care.
“I don’t think we talk enough about the impact of managing your care. With the way that our health system is structured, that burden falls on the patient and the caregiver, especially if you are someone that lives with a rare disease or a complex diagnosis,” she explained.
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“I just thought there’s got to be a better way. Finding PocketHealth was a game-changer.”
Hospitals, primary care providers such as family doctors and public health agencies all gather medical information differently and operate with different technologies, standards and electronic systems that don’t talk to one another, according to 2021 a federal report.
The lack of health data flow makes it more difficult for patients to receive proper treatment, the report added.
A new web-based tool called PocketHealth has partnered with hospitals and labs, enabling patients to access and share their images and reports.
“As a patient, especially if you’re going through a fairly complex care journey, you often feel like a ping-pong ball,” PocketHealth’s co-founder and CEO Rishi Nayyar said.
“You’re bouncing around from place to place. Your doctor didn’t get this fax from this place. Your surgeon didn’t get the CD, so you had to bring the CD in. And when that happens, it means that there’s often delayed care. ”
PocketHealth allows patients to type in the name of the hospital or imaging centre where their images were taken. They can then sign up and access their images, often within minutes, he said.
Because the company has partnered with hospitals, the system can “rapidly enable” the hospitals to push the images, such as MRIs and CTs, as soon as the patient’s request comes in, Nayyar said.
And PocketHealth uses artificial intelligence to help read patient data.
“We’ve built a model that actually gives patients a list of prompt questions for when they meet their physician, to ask about their radiology report and about their health care more broadly,” Nayyar said.
The company, headquartered in Toronto, has been around since 2016. Nayyar said more than 1.5 million patients are now using the platform, which is used by more than 800 hospitals and medical imaging centres across Canada and the United States.
The platform also offers different levels of service that patients can pay for. The most basic option has recently been made free to use. For patients who want more advanced features, such as storing their information or analyzing their reports more deeply, there is a fee.
However, 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 there can be unintended consequences for the health-care system with the type of technology PocketHealth offers.
“It can lead to overutilization. It can lead to anxiety. It can perhaps lead to unnecessary visits to your family physician,” he told Global News. “And maybe even visits to the to the emergency room. We’ve seen that with direct-to-consumer genetic testing.”
Whenever a third party enters the health-care realm, it also means a private company is involved with your health-care records, which sparks privacy concerns, he added.
However, Caulfield also believes this technology is empowering as Canadians have a right to access their health information, including imaging.
“It may also give you the opportunity to advocate for yourself and in our chaotic health-care system; that can be a good thing,” he said. “We have to figure out a way we can strike a balance between empowering patients with useful information and not scaring them into thinking they need health-care services that they don’t really require.”
Kristy Dickinson and her family.
Kristy Dickinson
Despite the potential drawbacks, for patients like Dickinson, the tool has helped save time and fill in the gaps.
“Any anxieties or potential situations that I’m worried about I don’t have to spend at all trying to be an accurate historian,” she said. “Tools like PocketHealth … if there are times when I cannot 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.”
