Own Your Health Data

by Matt Peters

Ten years ago, the U.S. reached a milestone. The White House announced on May 24, 2013 that more than half of the nation’s doctors were using electronic health records. A few years prior, in 2008, that figure was only 17 percent.

“Information is the lifeblood of modern medicine,” the announcement went on, ”but information can’t get where it needs to go when it’s on paper.” To address the limitations of paper-based medical records, the federal government invested $36 billion to improve health information technology and digitize our medical data.

Unfortunately, our data still isn’t getting where it needs to go. It’s now in virtual folders rather than physical ones, but it’s still immobilized. That problem is the subject that Boston-based design group GoInvo explores in its one-shot comic book, Own Your Health Data. The comic begins by describing a fragmented data environment where records are stuck in silos. Systems that were designed in isolation from each other vary across states, counties, and hospitals, and they lack a mechanism for exchange. As a result, healthcare professionals are often missing pieces of a patient’s history when they make treatment decisions or create care plans.

The comic follows an unnamed character as they attempt to navigate this fragmented system, both for their own care and that of an aging parent. Repeatedly reaching dead ends, they decide data ownership needs to change from provider to patient. They envision a model in which records are held in a central repository, giving patients access to all of their data and control over how they share it. Centralizing and democratizing data in that way, they explain, could improve research, innovation, and delivery of care.

At only eight pages, Own Your Health Data is a slim publication that keeps narrative structure to a minimum, opting instead to serve as both an explainer and manifesto to propose an overhaul of health data management. The approach is effective, since it provides just enough of a story to tie everything together. At the same time, the simplified cartoon style and unnamed characters give readers a canvas of sorts to fill in details from their own experiences with the healthcare system.

To engage a variety of stakeholders, GoInvo has released a white paper with the same title and subject as the comic. It will soon be published in the Journal of Hospital Medicine, according to a note below the coauthors’ names. Both publications are available at OwnYourHealthData.org.

A decade after the aforementioned White House announcement, the overwhelming majority of hospitals now use electronic health records. But the process of creating, retrieving, and sharing health records is still cumbersome, and physicians often spend more time interacting with health records than with patients. The room for improvement is considerable. Own Your Health Data pitches one way out of the quagmire.

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Matt Peters is a project manager and communications coordinator at Health Sciences Design, an interdisciplinary health innovation program at the University of Arizona. He is a longtime Marvel fan whose interest in comics and health communication drew him to the graphic medicine community.