The following was originally Katie McCurdy’s response to the excellent, ongoing discussion about the future for self-tracking. It’s too good not to elevate to a post of its own — Susannah.
Katie’s self-crafted medical timeline (Click to enlarge; see story below)
There is some recent thought that self-tracking or data gathering is “a manifestation of our profound self-absorption.” Sure, self-tracking is all about ‘me,’ (hence the word ‘self’) but there seems to be an undertone that people are motivated to track their data by vanity or narcissism. This may be true for some people, but there are others who are motivated by true medical necessity – diabetics needing to track their blood sugar, or people suffering from unexplained medical mysteries. I fall into the second group.
For the past 20 years I have had Myasthenia Gravis, an autoimmune disease that causes weakness. For the past 14 years I have been taking Prednisone, a corticosteriod, to suppress my immune system to help reduce my Myasthenia symptoms. Unfortunately prednisone causes a host of side effects. For the past 5 years I have been experiencing gastrointestinal problems (debilitating at times) and increased weakness. I have been to neurologists, a number of gastroenterologists, acupuncturists, and a few primary care doctors, and NONE of these folks were able to really explain what was happening to me or give me concrete advice for improving my condition.
As I was getting ready to see a new doctor, I realized that the best way to tell my story would be to create a medical “life story” timeline that reflected:
- The course of my autoimmune disease
- Severity of my gastrointestinal problems
- Key moments in time when I started and stopped certain medications or took antibiotics
- Any significant dietary changes
I sketched out the two timelines (autoimmune and gastrointestinal) separately, and then created them electronically using Adobe Illustrator. (I’m an interaction designer by day, so fortunately I had the skills/know-how to create a somewhat legible artifact.) I used a peach color to represent gastrointestinal wellness/symptoms, and a blue color for Myasthenia Gravis.
An important note – I did create my timeline from memory. I clearly remember, almost to the day, when my severe flare-ups happened. Like others, I have had a very hard time motivating myself to track my data daily and I don’t think I can bring myself to actively do it; until passive data collection exists for my specific disorders (or until I come up with a mechanism to force myself to track how I feel each day) I might have to just work from memory.
After I completed the timeline I printed it and took it to my doctor visit.
I can’t say the doctor was overjoyed at first to see a patient-created chart, but he listened intently as I used it as a storytelling prop. It definitely helped me quickly and coherently communicate what’s been going on with me, and when I asked him if he found it useful, he said it was helpful to get him up to speed on my story. Read more about my visit on my blog.
Last month I attended the Brainstorming Design for Health workshop at the Computer Supported Cooperative Work conference, and had the opportunity to show a print-out of the timeline to another doctor. He said that most doctors inwardly groan when a patient comes in with excel data, charts, graphs, and the like – mainly because patient data may not be totally accurate, and doctors don’t want to have to take the time to learn and understand another type of documentation or visual language. But after I gave him a few seconds with the timeline, he became very excited and animated and said this was something he could understand immediately; it could actually save him time in the exam room. The main lesson I’ve taken from that experience is that there is a definite need for a patient tool that would allow them to create legible, clear, communicative visualizations (perhaps even exploratory data visualizations on a tablet or phone) so that they can:
- Better understand what is happening to them and how what they do impacts how they feel
- Better communicate with health care practitioners
Let’s face it, even if a doctor is wary of a patient-generated timeline, if that artifact makes the storytelling process easier for the patient & more coherent for the doctor, it adds a lot of value even if the doctor doesn’t want to take time to carefully analyze it.
So what are the outcomes from this experience?
My new doctor has helped me resolve my most serious stomach issues, and it has been awesome to have some relief after years of discomfort and anxiety.
I can say that visualizing my history has helped change my behavior. Seeing the high number of times I took antibiotics in a short time period, and learning from my doctor that such repeated use of antibiotics causes overgrowth of yeast and bad bacteria, has helped me escape the antibiotic trap. Whereas a year ago I was calling my doctor for antibiotics every few months (they helped, but only for a month or so), now I work on adhering more carefully to a no-carb diet.
My goal is to keep pursuing this idea and work toward creating a tool for patients so they can at least assemble their own health timeline, and perhaps even track their data more regularly. I am holding interviews with patients, patient caregivers (or parents), and people who are active self-trackers; if you are interested in donating about 30 minutes of your time, email me at kathryn.mccurdy at gmail.com.
Here are links to the 2 blog posts I wrote about my experience w/this timeline:
Medical history timeline: a tool for doctor visit storytelling
Finally, if anyone is going to be attending the Healthcare Experience Design conference in Boston on 3/26, let me know! I would love to meet you!
More about me:
Note from e-Patient Dave –
- See also our November post by Kenneth Spriggs, The Benefits of Visualizing Your Medical Data.
- Look at this extraordinary patient-created visualization. Is this an engaged self-tracking patient, or what? I can’t wait for the day when new-wave software helps visualize this kind of pattern automatically. Until that day, we learn from examples like this – created by brilliant patients who see new possibilities.