Written by: Bonnie Feldman, DDS, MBA, and Hailey Motooka
We all know that a “picture is worth a thousand words,” but why haven’t we applied this approach to helping us tell our health stories? At last, Katie McCurdy, the founder and creator of Pictal Health, has used her design skills to create an easy to use process that helps us “visualize” our own health histories.
For many years I have seen countless doctors and specialists—one of the many collateral effects of living with an autoimmune disease, like living with with uncertain diagnoses. More generally, diagnosing an autoimmune disease takes, on average, 4.6 years. Why so long? Symptoms of autoimmune diseases can vary significantly between individuals, depending upon genetic, behavioral, and environmental factors, presenting challenges to definitive diagnoses. Biomarkers that can be measured in blood are neither comprehensive nor definitive, and blood tests may not correlate with symptoms. Slow or incorrect diagnoses can also be attributed in part to the disconnect in communication between specialists when health records are not easily accessible across disciplines. There are a few health organizations attempting to remedy this issue by creating multispecialty care centers, such as the Allegheny Health Network Autoimmunity Institute, Attune Health, and even The Cleveland Clinic, but we need more of these new approaches.
In order to more efficiently organize and visualize my health data from numerous doctors, specialists, and nutritionists, I decided to try the platform Seqster to create my personal health record. Seqster combines multiple data types, such as your electronic health record (EHR), genetic, and fitness data in one secure place, providing patients with a more comprehensive view of their health data.
I try to keep all of my health records in one place, i’m sure many of you can relate. But is that one place particularly organized? Not quite. Take a look at the “before” version of my health record platform.
However, thanks to Seqster, I have successfully managed to clear out (most of) the daunting drawer by connecting all of my medical and DNA data on their digital platform. In my previous post, I began looking to connect the Seqster personal health record to Pictal Health – an innovative service that helps patients build a visualized health story.
As an autoimmune patient, over time I have gotten better about keeping track of all my medications, appointments, and movement therapies. However, connecting all these factors to each other is a completely different story. Variables are constantly changing , creating a complex, dynamic health story that is not only difficult to record, but also difficult to articulate to others.
I contacted Pictal Health founder, Katie McCurdy, to begin creating my health story. Katie, eager to collaborate, began the process by sending me a Google Documents form to fill out my health summary. I excitedly filled out the first page of the form, thinking I had finished the task, only for Katie to later inform me that the Google document contained more pages! My initial excitement slowly morphed into ambivalence as the thought of filling out a lengthy document congealed into an urge to procrastinate!
However, anticipating my apprehension, Katie sent encouraging emails and guided me through the entire process.
Katie was able to fill out quite a bit of the Google Document by pulling health records and DNA data from Seqster. However, in order to fill out sections such as Symptoms, Triggers, Mental Health, and Life events, we talked on the phone to figure these out together. One of the sections on her form that I found to be very interesting was making a list of all the unsuccessful, unhelpful, unuseful conventional and functional prescriptions, ointments, lifestyle modifications, etc. that I had tried but which didn’t help. I had never aggregated such a list before, and seeing all of the ‘failures’ together was quite staggering.
In retrospect, the initial feelings of apprehension were more exaggerated than the actual process of filling out the health summary. Much of this can be attributed to Katie’s supportive and empathetic nature, as well as Seqster’s easily retrievable, well-organized health record.
Below is the first draft of my health story visualization. Quite the difference from the state of my drawer before, right?
My initial feelings upon seeing my health story were mixed. I was glad that the visualization is easy to follow and understand, but I was also quite disheartened to be reminded of my long history battling chronic illness. I am persistent on keeping an upbeat attitude so that my demeanor does not reflect my state of health, and occasionally this helps me to forget about all of my problems. However, this visualization serves as an important reminder that the battle is still ongoing, and I am determined to keep on fighting.
To our readers: Do you think viewing your health record visually is worthwhile? Let us know your thoughts in this survey.
Whatever milestone you’re at within this journey, maybe we can help!