The Limits of Health Data Aggregation

Why our health records don’t tell our whole stories

Katie McCurdy
Jan 9, 2019 · 8 min read
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1. Medical records have rampant errors.

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2. Medical records have a ton of data; not all of it is relevant to your story.

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“It is incredibly painful to find a patient’s story in their chart.”

There are surely insights to be gained through natural language processing and machine learning, but these findings will nonetheless always be constrained by the limited nature what’s actually included in our records. Which leads me to my next points.


3. Aggregation is mostly about digital data, but unless we are very young, a lot of our story is still on paper (or in our heads).

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4. Large swaths of our human existence are not captured in our medical records.

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  • When we look into our deep past, we can often remember times when our symptoms were worse or better; these stand out as symptom milestones of a sort. In October of 1997, I got double vision for the first time and had to have a series of plasmapheresis treatments. I no longer have any records from that time except some spotty doctor’s notes, but I clearly remember what happened, almost to the week. Sitting in the back of a large lecture hall, I recall squinting at my professor and being unable to focus correctly on him unless I closed one eye. In November 1997, I trekked across frosty campus sidewalks at dawn on my way get my plasma exchanged (3 days per week) at the University of Michigan medical center. I also started taking prednisone for the first time, and I was embarrassed to see my face swelling up (a common side effect) even while I was relieved that my symptoms were subsiding. These events aren’t easily available in my current medical record, but they are foundational to my personal journey, and they are easy for me to recall — often with a cinematic level of detail.
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  • Stress, in particular, is something we talk about all the time; we read self-help books and articles, we meditate, we exercise, we medicate, all in an effort to reduce our stress. But stress, as a concept, is not well-represented in a structured way in our medical records.
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Conclusions

Go ahead, put all my health data together into one big pile. It’s an important first step, but it’s still going to be missing about half of my story.

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Pictal Health

Turning health histories into visual stories

Katie McCurdy

Written by

Designer and researcher focusing on healthcare; founder of Pictal Health; autoimmune patient; chocolate-eater. katiemccurdy.com and pictalhealth.com

Pictal Health

Turning health histories into visual stories

Katie McCurdy

Written by

Designer and researcher focusing on healthcare; founder of Pictal Health; autoimmune patient; chocolate-eater. katiemccurdy.com and pictalhealth.com

Pictal Health

Turning health histories into visual stories

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