kilbertus: ontario's health-care system isn't broken. but patient information could be improved
mychart and other patient portals offer a lot of promise. but without context, just sharing the information physicians use does not help.
jul 5 2022
3 minute read
an operating room at the university of ottawa heart institute.
tony caldwell
/
tony caldwell/postmedia network
on june 3, i walked into the glengarry memorial hospital in alexandria after a physician friend said i needed to get my heart checked, likely a stress test. a visit to a hospital emergency would be the easiest way to get started.
within hours, my world was rocked.
i had breathing issues when doing sports and felt something was off but did not think it was too serious. soon, blood test results showed i had had a heart attack. this seemed impossible; i am a healthy, middle-aged cyclist, runner and hockey player.
the protocols kicked in: i had to stay in hospital and would be transferred to the university of ottawa heart institute. this was completely beyond what i expected — even if i knew it was the right course of action.
while i was trying to make sense of all the tests and what the future of my care would look like, one doctor commented that the health-care system is broken. this exasperation stuck with me. was the system that was treating me broken? it was a worrying thought.
the next morning, off to ottawa in an ambulance. even though it was a saturday, i had an angiogram that afternoon; they stuck a camera in my wrist, then up my arm into my heart. although sedated, i could see on a huge screen all the artery blockages in real time as my heart pumped away. at that moment, it seemed like every square inch of artery in my heart was blocked. it was the worst-case scenario. i needed open heart surgery. my head was spinning.
advertisement
advertisement
while i’m not the first person to have their self-perception of being a healthy person wiped out in a flash, what is relatively new is that i had images and numbers to prove how wrong i was.
i got that information through the hospital online patient portal, mychart. there, i could see the results of my first troponin i test, which measures the enzyme indicating damage to your heart following a heart attack. mine was 0.14 ug/l. a normal reading is between 0.00-0.04 ug/l. the comment included with the result was: “results greater than 0.04 ug/l are above the cutoff (99th percentile).” safe to say the results informed me, but did not educate me; what is an ug anyway? at this point, i was beyond scared, i was just going with the flow.
the following day, when i was talking about mychart with a nurse, she commented that patients immediately google results, then raise concerns and questions. well, that was easy to foresee. my troponin i results were not patient-friendly information. is my number kind-of-not-good, terrible or ok? how could i know?
six days after walking into a hospital emergency room, i was rolled into the operating room. i got my zipper: the scar on the sternum that leaves no doubt that you have had open-heart surgery. i also got my five “cabbages” (coronary artery bypass graft, or the acronym cabg). all the cool kids on my floor talked about their cabbages.
advertisement
advertisement
on june 15, i was good to return home to continue my months of recovery.
thinking back to that first doctor’s negative remark, i do not believe our health-care system is broken. in fact, it’s amazing. if my 13 days in hospital show something, it’s that the system can be responsive to complex and urgent patient needs.
if something needs improving, it’s how information is shared with patients. mychart and other patient portals offer a lot of promise. but without context, just sharing the information physicians use does not help. in my case, it was valuable for my guardian angel — my sister— who is a physician. i gave her access to my account and she could see results, often before my attending physicians read them. she knew what was going on and could answer my questions.
the aim is to have understandable information in the hands of patients. there are encouraging signs of progress, but a huge effort is needed if that goal is to become reality.
paul kilbertus is a toronto resident who recently had heart bypass surgery in ottawa.
share story