As a patient with two autoimmune conditions - Myasthenia Gravis and Sjogren’s Syndrome - I experience many symptoms. Some are known to me, like muscle weakness due to Myasthenia Gravis, but some are more mysterious, like heart palpitations, a hot face, gut problems - things that don’t neatly belong to any of my official diagnoses. I’ve often struggled to understand why these symptoms are happening. And once at an appointment, I’m often at a loss to figure out how to make the doctor understand what I’m feeling.
The fact is, my doctors have a very limited view into who I really am. Their EHR technology does not represent me as a full person, and it can’t tell them anything about what I’m experiencing at home and out in the world. Technology is failing to give doctors and patients the information they need to make decisions together.
For the last few years I’ve worked to fill that gap through self-tracking, data visualization, and drawing pictures to communicate about my health. (I’m a designer who already uses visuals to communicate complex concepts, so this comes somewhat naturally to me.) Technology has certainly played a role in my projects, but often I’ve ‘gone analog’ (usually to paper and pencil) out of necessity or convenience. Let me tell you about a few of these attempts.
A few years ago, in an attempt to communicate more succinctly with a new doctor, I created a timeline of two of my major symptoms (muscle weakness and gut symptoms) over the course of my lifetime. I created the timeline by hand, and then put it into graphics software to make it more legible and ensure I could continue to add to it.
I have used this timeline in many appointments to walk doctors through my life history. It helps me tell a more coherent and structured story, and it helps them understand at-a-glance what I’m saying. Multiple doctors have said “that’s the coolest thing ever,” and many have told me they wished that medical records were formatted into such a timeline.
Sometimes a timeline isn’t what I need. Awhile back I experienced a number of new and scary symptoms — among them stronger heart palpitations, dizziness, a hot and red face. I had a long wait to get in to see a specialist, so in the meantime I created drawings of how I felt. Here are some examples:
These symptoms were frightening and confusing, but drawing them helped me wrap my mind around them and make them less scary.
At the appointment, I laid all my drawings down in a row next to the doctor’s computer and talked through them. She listened, looking at the images, and then ordered a bunch of tests based on the symptoms I was having.
We figured out that the problem was a hormone imbalance, and I have been able to fix my symptoms by taking supplements.
For many years I’ve tracked symptoms, medications, sleep, exercise, and other factors in a huge spreadsheet. I call it my spreadsheet from hell, partly because it’s so large, and partly because I’ve color-coded it to reflect when my symptoms are flaring up (the more red a cell is, the worse the symptom is.)
It has been very helpful for managing symptoms while making medication changes. And, interesting correlations have emerged that have caused me to make lifestyle changes: for example alcohol ruins my sleep, and getting exercise seems to help just about everything. I’ve shared parts of this spreadsheet with my doctor at certain times, to demonstrate the severity of my symptoms or show some other trend.
My doctors have very little idea of what my non-medical self is really like. When I enter their offices I am very aware of our limited time, so I don’t embellish my story with (what feel like) extraneous facts about work, travel, recreation, friends, or family. But these things are important to my health. Awhile back I created this diagram of some of the people and things that support me and contribute to my life balance; if any areas are deficient, my mental and physical health will likewise become deficient.
What if I could easily generate this map so that I and my doctors could quickly see if I was lacking in any important area? My phone knows where I’ve been, who I’ve been spending time with, and it contains photo evidence of many parts of my life. My phone’s apps even know the identity of many of the people featured in the photos. It’s not a huge leap to think that we’ll soon be able to automatically generate a diagram to express how we’re doing with any certain facet of our lives.
What these experiences have taught me:
- Doctors are people, like anyone else; although they are trained to use verbal communication, visuals help increase their understanding and prevent them from having to keep as much information in their ‘working memory’ at any one time.
- Visual prompts have helped me communicate with doctors more efficiently and effectively.
- Even the act of preparing and creating visuals about my health has helped me feel more in-control and knowledgeable about what is happening to me.
- Unfortunately, many patients do not have the tools at their disposal (or perhaps the level of comfort with drawing) to create such visualizations for their providers.
- Technology is currently not optimized for visualizing and sharing health information, but in the future I hope we’ll draw inspiration from patient hackers and offer more robust and widely-available tools.