MyChart and other patient portals offer a lot of promise. But without context, simply sharing the information doctors use doesn’t help.

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On June 3, I walked into Glengarry Memorial Hospital in Alexandria after a doctor friend told me I needed to have my heart checked out, probably a stress test. A visit to a hospital emergency room would be the easiest way to start.

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Within hours, my world rocked.

I had breathing problems when I played sports and I felt something was wrong, but I didn’t think it was too serious. Soon, the results of blood tests showed that she had had a heart attack. This seemed impossible; I am a healthy, middle-aged cyclist, runner, and hockey player.

The protocols went into effect: I had to stay in the hospital and be transferred to the University of Ottawa Heart Institute. This was completely beyond what he expected, even if he knew it was the correct course of action.

As I was trying to make sense of all the tests and what the future of my care would look like, a doctor commented that the health care system is broken. This exasperation stayed with me. Was the system that was treating me broken? It was a worrying thought.

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The next morning, to Ottawa in an ambulance. Although it was Saturday, they did an angiogram that afternoon; They put a camera on my wrist, then they went up my arm and into my heart. Although I was sedated, I could see all the blockages in my arteries in real time on a giant screen as my heart pumped. At the time, it seemed like every square inch of artery in my heart was blocked. It was the worst case. He needed an open heart operation. My head was spinning.

While I’m not the first person to have their self-perception of being a healthy person disappear in an instant, what’s relatively new is that I had pictures and numbers to prove how wrong I was.

I got that information through the hospital’s online patient portal, MyChart. There I was able to see the results of my first troponin I test, which measures the enzyme that indicates heart damage after a heart attack. Mine was 0.14 ug/L. A normal reading is between 0.00 and 0.04 ug/L. The comment included with the result was: “Results greater than 0.04 ug/L are above the limit (99th percentile).” It’s safe to say that the results informed me, but they didn’t educate me; What is an ug anyway? At this point, I was more than scared, I was just going with the flow.

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The next day, when I was discussing MyChart with a nurse, she commented that patients immediately Google results and then raise concerns and questions. Well, that was easy to foresee. My Troponin I results were not patient friendly information. Is my number not good, terrible or okay? How could I know?

Six days after entering a hospital emergency room, I was taken to the operating room. I have my zipper: the scar on the sternum that leaves no doubt that you had open heart surgery. I also got my five “cabbages” (coronary artery bypass grafting, or the acronym CABG). All the cool guys on my floor were talking about their cabbages.

On June 15, I was ready to return home to continue my months of recovery.

Thinking about the negative comment from that first doctor, I don’t think our health care system is broken. In fact, it’s amazing. If my 13 days in the hospital show anything, it’s that the system can respond to the complex and urgent needs of patients.

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If anything needs improvement, it is how information is shared with patients. MyChart and other patient portals offer a lot of promise. But without context, simply sharing the information doctors use doesn’t help. In my case, it was valuable for my guardian angel, my sister, who is a doctor. She gave her access to my account and she was able to see the results, often before my doctors read them. She knew what was going on and she was able to answer my questions.

The goal is to have understandable information in the hands of patients. There are encouraging signs of progress, but a great deal of effort is needed for that goal to become a reality.

Paul Kilbertus is a Toronto resident who recently underwent heart bypass surgery in Ottawa.

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