Blood and Barbed Wire

Visualizing a friend’s complex health history


Initial meeting

Despite the informality of working on the floor of my home office, I felt that I should kick off the meeting with some semi-professional expectation-setting; I let him know that my main goal was to put together visuals that would help him more effectively tell his story when seeing a new GI doctor. I also told him I was going to ask a lot of questions and he could opt out if he didn’t want to talk about something. (That seems important when crossing boundaries between friendship and informal counseling.)

Timeline sketch

We started with a timeline of events. I had taped together four 11x17 pages and drawn a line to represent his whole life. Using his prepared narrative, we hunched over the timeline and noted key events; as we worked, he also remembered things that were not in his document.

Some detail from the initial timeline

Feeling good/bad

Next I left the room and gave him some materials to put together a picture of what his body feels like when he’s feeling good and feeling bad. I’d prepared a sheet of icons that he could cut out and tape to the body shape, or he could simply draw on it. He took about 10 minutes to do this.

“Like barbed wire making its way through my intestines”

Feeling good:

Key problem

Aside from not getting any answers or solid reasoning for his symptoms, my friend’s biggest frustration was that new doctors kept wanting to have him try the same treatments, even though he was sure they were not helping. We decided to put together a matrix showing what ‘helps’ and ‘does not help’ along with any supporting evidence.


Putting it together

After that first meeting, I put together two documents. First, I created a digital version of the timeline we’d begun on paper. For this I used Adobe Illustrator. I wanted to communicate a few things at-a-glance: the fact that he had been experiencing pain and burning his entire life, the timeline of his bleeding, and the volume of tests that had been done. On closer look, the test descriptions contained notes about results and findings whenever possible.


The doctor appointment

I got a text as he was sitting in the waiting room before his appointment:

“Thank you for getting me here with the most confidence I’ve had to articulate my situation. Will keep you posted!”

At the appointment, my friend began by asking for a few minutes to talk through his story. He laid down the pieces of paper (in an order we’d previously discussed) and used them as visual cues as he talked. He found the doctor to be receptive to these materials, and she even expressed some enthusiasm. (Considering how many pages of ‘faxed records’ doctors usually have to dig through, it’s easy to understand why she would be happy to see his succinct summary.) A follow-up text included this:

“The design was SUPER helpful and the doc was also very impressed/appreciative.”

My friend called me after his appointment and expressed some frustration that doctors should have to make same-time decisions upon receiving such a large volume of information; he felt this was not fair to the doctors and wished they could have more time to consider his case. That would be nice, but unfortunately that is not how medical billing works at this point. Doctors aren’t usually paid for time they spend outside of appointments pondering their cases.


Closing thoughts

What we assembled was basically a patient-oriented personal health record; one that, while not comprehensive, contained the important major points that he needed to communicate. It brought together information from the many different doctors, clinics and institutions at which he’d been seen over the years. It presented information in a more succinct way than any health record possibly could (at this point), because we took the time to groom cross-institutional information, combine it with his personal experiences, consider how a doctor would need to consume it, and deliberately lay it out.


Pictal Health

Turning health histories into visual stories

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Katie McCurdy

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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