Written by: Bonnie Feldman, DDS, MBA, and Hailey Motooka
We all know that a “picture is worth a thousand words”. Despite that, 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. It depends 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. Currently, there are a few health organizations attempting to remedy this issue by creating multispecialty care centers. More specifically, Allegheny Health Network Autoimmunity Institute, Attune Health, and even The Cleveland Clinic, but we need more of these new approaches.
Trying New Things
I decided to try the platform Seqster to create my personal health record. This was an attempt at better organizing and visualizing my health data from numerous doctors, specialists, and nutritionists. Seqster combines multiple data types to allow patients a more comprehensive view of their health data. These data types include electronic health record (EHR), genetic, and fitness data, all combined into one place.
I try to keep all of my health records in one place and 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, I successfully managed to clear out (most of) the daunting drawer. I was able to connect all of my medical and DNA data on their digital platform through Seqster. 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, I have gradually 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. This creates a complex, dynamic health story that is not only difficult to record, but also difficult to articulate to others.
Becoming A Little Daunting
I contacted Pictal Health founder, Katie McCurdy, to begin creating my health story. Katie 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. However, Katie later informed me that the Google document contained more pages! My initial excitement slowly morphed into ambivalence. 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, we talked on the phone to fill out sections such as Symptoms, Triggers, Mental Health, and Life events. I found one of the sections on her form to be very interesting: a list of all the unsuccessful, unhelpful, useless 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.
The Final Compilation
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. Aiding with that was also 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. Occasionally, this is successful and it helps me forget about all of my problems. However, this visualization serves as an important reminder that the battle is still ongoing. Regardless, 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.
Maybe we can help regardless of which milestone you’re at within this journey!