As a designer, problem-solving is an instinct and a daily practice. I spend my working days trying to creatively solve all manner of problems. I’m constantly trying to figure out how to make systems more efficient, make interfaces more user-friendly, communicate more visually, tell more compelling stories, help my teams work together more effectively, and understand my end users better so that I can help create appropriate solutions.
When I go home at night, I can’t ‘turn off’ this way of thinking. Especially when it comes to situations where the stakes are high – like with my health. I’d like to tell you about a few ways my design instincts have helped me a) better communicate with my doctors about my health and b) elicit exclamations of joy from numerous healthcare providers.
First, a little background. For 23 years I have managed life with two autoimmune conditions, Myasthenia Gravis and Sjogren’s Syndrome. Myasthenia Gravis, or MG, causes weakness in voluntary muscles and especially impacts my face strength – I sometimes have difficulty smiling or eating, I have bouts of double-vision, and sometimes an eyelid becomes so weak that it will close on its own. Sjogren’s causes a constellation of symptoms like dry eyes, joint pain, and heart palpitations. I’ve also experienced stomach problems for the past decade – the cause of which is still unidentified.
A few years ago, while living in New York City, my symptoms became so severe that they were causing daily anxiety and I was desperate, after visiting numerous providers, to find a solution for the source of my problems. I was referred to a doctor who embraced alternative therapies; but he did not take insurance, and I would be spending at least $500 of my own money on that first consultation alone. I therefore needed to maximize my time with him and ensure that he unequivocally grasped my entire story.
Past experience told me that a free-form storytelling session in the doctor’s office would not suffice. There are no helpful cues in the beige, bland clinical environment, and I’ve often walked out of a doctor’s office and suddenly remembered an important question or thought. And by that time, my symptoms and history were complex enough that I knew I’d have a hard time keeping everything straight.
My design mind took over. I’ve found in my work that visualizing a complicated situation is usually the best way to understand it. So I started sketching out a visual timeline on a few pieces of paper that charted my entire MG experience – not only hard facts like medications and procedures, but how I *felt* over time and the amount of weakness I was experiencing. Times when I was feeling better I noted as ‘high’ on the y-axis of the timeline, and times when I was not feeling so well I marked as ‘low’ (or negative) on the y-axis. I created a separate timeline of the progression of my stomach problems over my lifetime.
I did all of this from from memory; it was easy to remember when I had felt very good or bad, and all the time in-between I scored somewhere in the middle. I soon moved from a sketch into a graphics program (Adobe Illustrator) so that I could add a few notes and overlay the timelines.
It looked pretty. I printed the whole thing out, taped it together, and studied it. I felt a new ownership and understanding of what had happened and when, and I felt more confident that I could make better use of time in my upcoming appointment.
In the visit, I laid the timeline down in front of the doctor and started talking. An ordered and coherent story unfolded, and as I talked I pointed to key high and low moments. The result was a more structured conversation that allowed me tell my story more efficiently while saving the doctor from having to parse a more rambling narrative. Although he appeared a little impatient, when I asked what the doctor thought of the timeline he said it had helped. I considered the experiment a success.
Since that time I have added more notes to my timeline about past diagnoses and treatments, and I’ve shown it to about ten more providers either in printed form or on an iPad. Their response has been universally positive, and I’ve heard the phrase ‘this is the coolest thing ever’ at least twice. The timeline prop has allowed me to act as my doctors’ assistant during the scarce minutes I have with them, pointing out the data points they are looking for (‘here is how I was diagnosed,’) which has helped them avoid digging through piles of data while helping me avoid unnecessary testing.
I’ve also gained some new insight into the patterns and ‘shapes’ of my two conditions over time, and this has actually changed the way I care for myself. I noticed that I seemed to have weak episodes at the end of the summer or in early fall. Knowing this, I have been especially careful to get enough sleep and watch out for early symptoms at that time of year. I also observed that the antibiotics I had taken for my stomach issues seemed to only help for a short period, after which I would feel very bad again. This caused me to stop accepting antibiotics as a ‘solution’ and start looking for ways to deal with the root cause of my problems.
Obviously the timeline has been an effective tool for me. But sometimes I need something a little different, so I have dabbled with other ways of visually presenting my health. One thing I have tried is mapping out the different types of sensations I was feeling (like burning and tingling in my limbs, weakness in my eyes, or an upset stomach) on the outline of a human body, using colors and shapes to communicate how I was feeling.
While it can be a little depressing to look at my symptoms collected all together, I have found that it helped me explain their range and severity. During one visit with my primary care doctor, I observed that she continually referred back to this symptom map and held it in her hand while we were talking. It seemed to help her externalize the work of remembering all of these seemingly disconnected bodily sensations. I took that as another success.
I’ve also tried mapping and clustering my symptoms, associating the ones that seem to happen concurrently and coding whether they are aggravated by humidity or carbs.
I’ve used that one in a couple more ‘in-depth’ meetings with an herbalist and a nutritionist.
I suspect I’m not the only person who has a hard time articulating my symptoms, fears, and questions when I’m sitting in a stark white room in a paper smock. We don’t often think about the importance of this moment to our healthcare experience, but it’s usually the only time we have the doctor’s full attention. How empowering it would be for all of us patients to take a little control over this moment and present our stories like expert witnesses.
How do we get there?
- We can help patients communicate like designers. I have started pulling together a few communication tools for patients on my website, including a timeline worksheet and ‘symptom map’ worksheet.
- We can highlight success stories in which patients have used visuals, checklists, and other props to take better advantage of their doctor visits. Do you know of any examples? Let us know!
- We can partner with doctors and clinical staff to better understand what information is most helpful to communicate to them, and we can encourage them to support patients in using these types of communication tools.
My hope and vision is that patients everywhere become empowered to use visual methods to tell their stories, and if my own experience is any indication, this will vastly improve communication with their providers and elevate their self-understanding.
If you would like to talk further about these types of communication strategies, please feel free to reach out to me at firstname.lastname@example.org.
Katie McCurdy is a UX designer and researcher focusing on healthcare and a Stanford MedicineX e-patient scholar. You can learn more about her at katiemccurdy.com.