The Limits of Health Data Aggregation: why our health records don't tell our whole stories

I like to keep up with news about health innovation, technology, and startups. I find it interesting, and as a designer working in healthcare I need to stay informed.

In browsing healthcare technology news from various outlets, I’ve noticed that a lot of it is about health data — how it’s siloed (sorry to use that word); how and why it should be aggregated; how it should easily flow between systems; how patients should own and control it.

These are all true and good things. But I’ve noticed that there’s a ‘holy grail’ mentality when it comes to interoperability and aggregation; a sense that if we could only bring all the data together in one place, we’d finally have a complete picture of a person and be able to diagnose and treat them more effectively.

In my recent work helping patients assemble and communicate about their health histories with Pictal Health, I’ve learned about what information they consider important and spent a lot of time working to visually represent that information. Their stories are filled with life events, theories, feelings, and nuance only they can provide.

When I compare these visual, holistic stories to the health records I’ve encountered, I can say with confidence that data aggregation alone cannot produce a person’s whole health story. Here are a few reasons why.