Member-only story
I WANT MY HEALTH DATA!
ON LOSING PATIENCE AS A PATIENT
I want my health data, now! A dashboard! A pie chart and a bar graph! Averages and medians! I want what we data managers provide: lineage, scope, and projection models stored on a secure cloud-based platform. But today, I only have puzzle pieces.
My primary care provider has medical history that spans a mere seven years because I switched from one practice to another. I wanted my records transferred but my prior doctor’s office ghosted me even before ghosting was a thing so all of those years of my former physician’s obsessive advice about pulmonary health (I have healthy lungs — he was just weird) and his well-documented chastisement about suggested weight loss “improvements” are gone. My new doctor begins a fresh set of stats, as if I am a newborn at my first checkup: “She can walk! Brilliant!! “I like her can-do attitude. She’s a keeper.
My various specialists, aka My Battery of Professionals, use their own databases that are populated with information about my specific body parts: joints, skin, eyes, thyroid. For these spare-part experts, the knee bone is not connected to the thigh bone and so my organ of interest is their only source for data points in their isolated tables. Like my heart and kidney, each spreadsheet stands separate.
