How visualizing health problems could help solve medical mysteries

This week I’ve taken on the task of visualizing my own medical history and symptoms, in hopes of making the most of my appointment with a new doctor. Below is the full story (and visualizations are at the bottom).

My medical story: the background

BEFORE: Me, circa late 80s, with full smile functionality

AFTER: this picture is so awesome in so, so many ways. My family, circa 1993; I am the one in the top middle, with poor smiling power.

One early winter day when I was 13, I was sitting at the dinner table with my family laughing at something my brother had said.  My mom stared at me and asked why I was making that face.  “What face?” I said. She said my smile looked different, like a grimace. I ran to look in the mirror in the bathroom. I looked into the mirror and smiled back at myself, but it was like the corners of my mouth wouldn’t stretch to the sides. I looked more like a dog baring its teeth.

Such began my voyage with the auto-immune disease, Myasthenia Gravis. This non-degenerative disease causes muscle weakness, mostly in voluntary muscles, and often affecting facial muscles like the eyes or mouth. No one really knows why, but MG often affects older folks and girls around the age of puberty. Fortunately for me, I was diagnosed very quickly and soon had my thymus gland removed, which improves the long-term outlook for patients.

Over time, I went to college, studied abroad, was a ski bum in Big Sky, MT, lived in Vermont for six years, went back to grad school, interned in silicon valley, and eventually ended up working for the digital agency R/GA in NYC. During those full and exciting years, my MG was mostly under control, though I had a few serious flare-ups that caused complete double vision. When that happened, I had to spike my dose of the immunosuppressant corticosteriod drug, Prednisone, to bring my immune system back under control; and then I’d have to taper back down over a few weeks or months to my regular dose.

In full eyepatch regalia, late summer 2011

Prednisone, you are a harsh mistress. Over our 14 year relationship, this drug has helped me maintain a very active and normal life. It’s allowed me to hike some big mountains, ski some dangerous peaks, travel around europe, survive grad school, and work some long days at my job (which I love). But it’s also sucked the density out of my bones (at 31 I had osteopenia, which is pre-osteoporosis) and for the past 5 years I’ve dealt with sometimes crippling digestive issues caused by so many years of suppressing my immune system.

Antibiotics: the season’s black

I started trying to deal with my digestive problems starting in the fall of 2008. Since then, I’ve seen 4 gastroenterologists and have taken about 7 or 8 courses of antibiotics, none of which has permanently ameliorated my symptoms.  Last year, I started having chest pain/heart palpitations and joint pain, which seemed very associated with my stomach symptoms. The doctors I talked to didn’t seem to believe me when I said that it seemed like the problems in my gut were causing these other symptoms. But no one could explain why, when my stomach was good, these symptoms went away.

Unfortunately, I think that by taking so many antibiotics over the past few years, I have thrown my body chemistry way out of balance. I believe that I have systemic candidiasis that is causing my joint pain, heart pain, tingly legs, and other sordid symptoms. I’ve reached these conclusions mostly through extensive googling, but this week I’m going to a new doctor who has a more holistic approach.

How to communicate this story to my new doc?

The new doctor I’m going to see supposedly at one time dealt with his own medical problems stemming from long-term Prednisone use. He is an MD but does not take insurance, so if I end up seeing him regularly I may end up spending thousands of dollars on him. It is therefore utterly imperative that I maximize my time with him and ensure that he unequivocally grasps my entire story.

Here’s how this would usually work. I’d fill out some paperwork, maybe send some medical records. Then I’d come in for the office visit and, over a half hour or so of my rambling and his questions, I’d be able to communicate an approximation of my medical history. But I might forget a few things here, underemphasize a few things there. He would get a somewhat blurry picture of my past health.

This time I’m doing something different. I believe that this time, the best way to communicate my story will be in pictures and graphics.

Let me explain. I work as an interaction designer; this means, in a nutshell, that I make interfaces (like websites or mobile applications) more intuitive and enjoyable to use. It is my job, and my passion, to simplify the complex; to make navigation systems make sense; to help ensure that complex systems and processes feel ordered and logical. I know that to solve a problem, you must first understand it. I’ve found in my work that visualizing a problem is usually the best way to understand it.

So for this week’s office visit, I have prepared a visual timeline, an infographic, if you will, that I will print and take with me to my visit.  This timeline charts the progress of my Myasthenia Gravis since I was 13 – not only the hard facts like the medications I was taking at the time, but the way I *felt* during those times and the degree of weakness I was experiencing. Overlaid is the progression of my stomach problems over my lifetime, including the points in time when I took antibiotics. Laying these waveform-like patterns on top of one another reveals that often my MG and my stomach problems were involved in a dance of sorts, taking steep dives simultaneously.

These past few years have been especially interesting!

The whole timeline - click and enlarge for the full experience

I’ve prepared this graph from memory only. I don’t currently have possession of my medical records, but I would like to get them and create a real, scientific representation of my medical history – overlaid with how I was doing over that time period.

I’ve also created a simple chart that lists my symptoms and the way I feel when I feel ‘Good,’ ‘Medium,’ and ‘Bad.’ This was a way of helping me exhaustively list and catalogue my symptoms, so I won’t forget anything at the visit.

Awesome, awesome potential

Visualizing information is one of my great passions, as is designing digital solutions to improve healthcare. By merging those two passions to try to solve my own medical mystery, I feel as though I’ve stumbled upon something that has the potential to help patients and doctors communicate more efficiently, and that could help doctors connect the dots for patients who have lots of mysterious symptoms or who see a bunch of different doctors. I don’t necessarily see this as a Personal Health Record, but more of a companion graphic that can be read and understood quickly and efficiently.

So, who should generate such a graphic? As things stand right now, I think the responsibility has to fall on the patient or the patient’s caregiver, as health data is not currently in the condition or format to be imported into a tool and dynamically made into a legible, relevant chart.  The question remains – can we create a tool expressly for visualizing personal medical histories, one that accounts for both ‘hard’ data points like medication dosages and procedures performed along with ‘soft’ data points like how the patient felt (physically and mentally/emotionally)? I think this is a design problem worth pursuing.

For whoever may be interested, I will update here after I’ve visited my new doctor this week and gotten his feedback.

31 thoughts on “How visualizing health problems could help solve medical mysteries

  1. Hi, Katy,
    I am so sorry that you have been experiencing so many problems, both in the near and the long term. However, the good news is that it seems as though your difficult life experience may just be providing the seeds for a truly innovative means to deal with it; ..one which will benefit not only you and your healthcare providers, but one that has the potential to help many others as well….myself included.
    As someone with a chronic condition, the symptoms of which wax and wane and vary in intensity, I find it that trying to document and report it all is overwhelming. The pairing of your educational background and life experience would seem to be spawning a brain child. I find this fascinating and I am thrilled for you that your health struggles are also providing inspiration….(.that mother of invention.)…stimulation, satisfaction, and hopefully, some resolution.
    With your approval, I will follow your progress earnestly. Please know that I am cheering you on from back home and have ffaith that you will seek and find every bit of good that you can from this journey. You have done an amazing job all of these years, and now you have even more tools to bring to the table. I know I speak for the home team when I say that we are so proud of you!!

    Love, Dee Frisbie

    • Thanks Dee! I appreciate the support. I hope something good will come of this little experiment, and if I ever need people to interview or test with I might come find you! :)

  2. Katie you are an inspiration to me. What a blog!! Not being very savy when it comes to computers, etc., I admire your expertise on this site. What a brilliant idea you accomplished. I understand your frustration and dilema on medical issues. You are right, one has to take charge, grasp at straws, research to try and find an anwer. With my poly myalgia rheumatica, another autoimmune disease, I struggled for years to get a diagnosis. I just wanted to get an answer. I am on Predinsone too with some relief but a ways to go. Praying for you always, but esp. today with your Dr. appt. Asked your mom yesterday to keep me posted. You are a real soldier, a strong woman and a sweet godchild. Sure hope you get an answer and treatment. Love, Anita P.S. Hi to Nick, another real soldier, strong man and sweet person!! You two deserve each other.

  3. I found your blog through a friend. I can’t speak to the immune issues, but I recently started treating what I believe to be candidiasis and am having success. I originally thought I had IBS or gluten issues, but that didn’t explain the frequent yeast infections, white tongue, etc. I started to think they might be connected. I’ve essentially tried to cut out carbs and alcohol/vinegar. I have also started taking a probiotic called ThreeLac as well as something called Candex that is supposed to weaken the yeast’s cell walls thereby allowing the yeast to be digested and flushed from the body. (http://www.pureessencelabs.com/Candex-candida_digestive_enzyme_supplement.html)

    It’s been about 6 weeks or so and I’ve experienced pretty dramatic results. Obviously this is just one person’s experience, but I thought I’d mention it after happening upon your blog. Best of luck!

  4. Good morning Katie,

    What a creative and intelligent way to deliver your concerns, symptoms and insights to your new Dr. We are hoping for the best for you and that you can get some relief.

    We will keep you in our thoughts and prayers and look forward to hearing what the new Dr. says.
    Love,
    Chris Samardich

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  7. Katie,

    Thank you for an inspiring story. You are onto a problem that is very, very important for achieving effective patient-doctor collaboration.

    I can’t help but wonder whether what you are trying to do can be accomplished through the “patients like me” platform. Do you know it? Not only does this site allow individuals to track and visualise their personal catalogue of symtpoms, but it helps patients and medical professions understand how symptoms vary across whole populations of patients with common medical issues.

    You can access it here: http://www.patientslikeme.com
    or listen to a very well presented talk about the whole idea here: http://www.ted.com/speakers/jamie_heywood.html – the video is in the top right corner.

    Greetings from Denmark,
    Katrine Kirk

    • Thanks Katrine! I have seen Patients Like Me – it can do some of what I am looking to accomplish, but it’s not quite flexible enough to do everything I want it to. I will look more at it though, for inspiration! Thanks for the feedback and the suggestion. Take care.

      • Thanks for your response. I wish you good luck in your efforts and look forward to following new developments on your blog.

        Sincerely,
        Katrine – in Denmark

  8. Katie, this is brilliant!!!! There are so many applicants for this! And I had the same experience with trying to convey to both my latest doctor and a nutritionalist in the past month! I’m really looking forward to ur conversation….

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  11. This is fantastic. I’m a subspecialist who sees kids with breathing and sleep problems. Patient logs are so important to sort through complex histories and data; they are seldom beautiful like these are. I’m sharing a few in a post I’m writing if that is OK.

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  16. A patient needs a doctor who truly listens to his or her patients, because a doctor who actually listens to the questions promotes an environment in which you feel capable of discussing the questions and concerns plaguing you.

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  23. I am so excited to read this post and find your blog. I am a graphic designer who by nature thinks visually (thank you Saul bass!), and I have experienced a plethora of odd medical symptoms throughout my 34 years, climaxing after the birth of our last child in February. Suspecting an autoimmune disease, as symptoms greatly are reduced during pregnancy, I was googling “personal medical history timeline”, hoping to find a fill-in the blank timeline to help tell my complete story to my dr at an upcoming appt. But instead I found your great visual timeline! I have had many similar issues, including suspected sjogrens, gi issues, neuropathy, food intolerances and joint pain. And now I’m inspired to pull them into illustrator in a timeline to see how and when they’ve all overlapped. Thank you for the inspiration and pleases keep going in your work. I believe that storytelling has great potential to change the quality of healthcare as all the pieces are able to be better understood when seen in context of each other.

    • Wow, thank you Jessica! It sounds like we have a lot in common symptom-wise. I hope that creating a timeline will help you sort through and explain what’s been happening with you, and if you’re ever willing to share the results I’d love to see how someone else thinks about tackling this problem from a visual standpoint. I’m always trying to think of new ways to graphically explain ‘invisible’ symptoms and conditions. Good luck to you!

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