Can’t make heads or tails of medical scans? A Canadian woman found a way
Global News
Delayed access to personal health data causes harm to patients, and can result in unnecessary or duplicative tests, longer wait times and hospital stays and medication errors.
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.
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.
