How ‘small’ data visualization helps complex patients be heard, seen, and believed

Imagine your body starting to fall apart. You have heart palpitations, headaches, recurrent infections, painful fingers and toes, crippling brain fog, and body aches. You’ve become sensitive to light and have started wearing sunglasses indoors. Every day seems to bring a new symptom, and your doctors can’t figure out what’s going on. Worst of all, many doctors — and even some of your close friends and family — act as though you’re just trying to get attention or that it’s all in your head.

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When you finally get an appointment with the specialist you’ve been waiting for, you want to be sure to use the time well. How can you tell your complicated story and make sure the doctor understands and believes you? …

Last year I put together an annual report of progress and pains related to starting a company. Now, a year later, what’s changed? (Apart from the global pandemic that has upended life as we knew it.)

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Accomplishments

  • I’m now working with my 54th health history visualization client; I’ve had 32 paying clients, and 22 pro bono clients. That adds up to at least 550 hours of direct client work, probably more. I’ve learned a ton in that time, and I try to share insights continually here on Medium.
  • Last summer I worked with 10 veterans with complex health issues as part of a pilot project with the VA. It was a lower-technology process, and I loved getting know the veterans. I wrote this article up to summarize my experience: How visual health histories can help military…

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Today, as COVID-19 social distancing, quarantines and hoarding occupy our minds and cause worldwide anxiety, I want to share a practice that has helped me stay semi-grounded over the past few years: visual gratitude journaling. And like many gratitude journal stories, this one began during a particularly low time in my life.

About three years ago, I was loving my work in healthcare design consulting and was a generally happy person. Then I suddenly hit a wall. It was only 6 months after the 2016 election (a difficult time for many of us); I was approaching my 40s, which data shows is a common time for mid-life blues; I was anxious about climate change; and I was dealing with some interpersonal issues. I became burned out and depressed. The sun was shining outside, but I felt a sense of doom and anxiety inside. …

Last summer I had the opportunity to help ten local military veterans create visuals depicting their complex health histories and symptoms. This is what I do — my company, Pictal Health, helps people visualize their symptoms and health journey so they can communicate better with their doctors.

This project was funded through the Veteran Health Administration (VHA) Spark-Seed-Spread Innovation Investment Program, which helps employees “design and test Veteran-centric solutions in a space free of operational day-to-day restrictions.” I collaborated over the course of the project with two psychiatrists working at the local Burlington, Vermont VA clinic: Dr. James Rustad and Dr. …

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Working alone (mostly in my house) as the solo founder of Pictal Health, it’s hard to get anything done. I find myself tossing a load in the laundry, wiping down counters, and getting into the weeds with home office organization. Before I know it, multiple hours have disappeared, my house is sparkling, and I am disappointed in myself because I haven’t accomplished anything.

In my prior work as a User Experience Designer, I collaborated closely with people who were counting on me to get my work done; accountability to others has always been my top motivator.

Now, in this accountability void, I’ve been adopting various strategies for staying focused and making progress. Drawing my weekly goals has been an important part of my regimen, and I’m going to show you in a minute exactly how I do it. …

How visual health timelines might help people with PTSD

Since founding Pictal Health about a year and a half ago, I’ve been helping patients with mysterious, rare, and complicated health issues visualize their health history and symptoms so they can communicate better with their doctors. As of today, I’ve worked with 45 people, including 10 Veterans (through a grant-funded project with the VA.)

As someone who has experienced mysterious symptoms that are unacknowledged or misunderstood, I’ve been focused on helping others like me; people who don’t fit neatly into diagnostic categories. They often end up bouncing from doctor to doctor, telling their stories over and over. …

When I was growing up, I would refer to my godfather Don as ‘my dad’s partner.’ I’m from a small manufacturing town in northern Michigan, and everyone knew my dad, so there was little confusion. Times have changed, and now I stress ‘law partner.’ But really, they were more like life partners.

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That’s my dad on the left, Don on the right

Don Samardich hired my dad straight out of law school in the 70s, convinced him to move to Cadillac, MI, and told him ‘we work hard and play hard.’ I like to think it was before that phrase was so overused.

When my parents moved to Cadillac it was a true outpost, with little culture, few forms of entertainment and apparently no restaurants of quality — my parents like to emphasize that they had to drive an hour to get to the nearest Chinese food place. They were isolated in the northern woods of Michigan, hours from the nearest city, in those analog years filled with books and magazines, records and tapes, and miles of orange and yellow shag carpet. …

It’s been awhile since my last update, and I want to share some more nuggets of insight I’ve gained while conducting the business of Pictal Health — helping people visualize and share their health histories. Let us jump in.

Visualizing daily functioning

In a couple of recent cases, I’ve come up against the limits of the two major forms of visualization I’ve been using — a health history timeline, and a symptom map.

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These are helpful when people need to show what happened over time or illustrate their bodily symptoms — two common needs — but recently a few clients have wanted to bring to life their ‘limited daily functioning.’ …

One year ago, on my 40th birthday, I fired up the Vermont Secretary of State website and filed a new business, Pictal Health. I bought a PO Box, got a business bank account, and started working on the brand and logo. From then until now, I’ve gone through periods of accomplishment and stagnation, emotional highs and lows, and varying degrees of chocolate consumption. Allow me to break some of this down, in the name of personal reflection and organizational transparency.

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Accomplishments

  • I put together a website, brand, and business that enables me to work 1-on-1 with people to visualize their health history. This involved putting together legal agreements, figuring out how to take payments, developing templates, and making the process clear on the website. …

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Recently I was in D.C. at the Health Datapalooza conference giving a presentation on Pictal Health, the company I’ve been starting to help patients visualize their health journey so they can communicate better with their doctors. After I finished talking, someone stood up and asked, “are you worried about the quality of information that patients give you, since they’re known to be poor historians?”

I’ve gotten this question many times recently. And my answer is: no, I’m not worried about the quality of information I get from patients, and furthermore I don’t believe in poor historians. Let us discuss.

First, a little background on how I work with people. To start with, I take as much time as needed (usually multiple hours) to listen to their whole story, ask questions, and take lots of notes. The story often unfolds over multiple conversations, and my role is to capture all the details and organize them. Next, I create visuals to represent what they’ve told me; then finally, I prep the patient on how to print and use these visuals effectively in their next appointment. …

About

Katie McCurdy

Designer and researcher focusing on healthcare; founder of Pictal Health; autoimmune patient; chocolate-eater. katiemccurdy.com and pictalhealth.com

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