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Tracked, But Not By Me

Two weeks ago I sat with my hematology team to talk about two new problems: trouble swallowing and weight gain I could not explain. The hematologist ordered chest and abdominal CT scans and a referral to a gastroenterologist, who would in turn order an endoscopy. This week I returned for a different reason. A rash…
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Not Asking Permission

The results arrived on a Tuesday. Routine bloodwork, the kind that reminds you, every time, that remission is not a finish line. Most of the numbers were where they needed to be. One was not. My next clinic appointment was three weeks away. My hematologist is excellent. Her team is too. Neither was available at…
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Patients and Caregivers

I have been the patient. I have not been the caregiver. The distinction matters before I write another word, because everything ahead depends on holding two roles apart, and I would lose the thread if I blurred my own standing to make the case. I watched the caregiver. I carried the illness while my wife,…
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The Valve and the Deli Counter.

I spent a career helping build Canada’s digital health systems. On a Monday morning, I came to a microphone as a patient. Across from me sat a panel of executives and officials. I told them a short story about my own care. Months earlier, a surgical team had replaced my failing aortic valve through a…
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Digital Health Is an Oxymoron

The Podcast Digital Health Canada produces a monthly podcast called Digital Health in Canada, hosted by Shelagh Maloney and Katie Bryski. It brings together leaders from across the Canadian health technology sector to explore, in the hosts’ own words, “the human side of digital health in Canada.” Episodes run about 35 minutes and are released…
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Share My Damn Data! Please

“Those who build walls are their own prisoners. I’m going to go fulfill my proper function in the social organism. I’m going to unbuild walls.” — Ursula K. Le Guin Throughout my stem cell transplant journey, a PICC line was my constant companion. A peripherally inserted central catheter is a long, thin tube threaded through…
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S-5. I’ve Been Waiting Twenty Years for This Bill. It’s Not Enough.

After twenty years of writing about health IT interoperability, and five years actively engaging the health system, Ottawa finally tried. I wanted to celebrate. I can’t.