Written by: Bonnie Feldman, DDS, MBA, and Hailey Motooka
As I prepare to visit my rheumatologist next week for a scheduled appointment, I am simultaneously eager and apprehensive to share with her my health updates. This is merely a pre-appointment ritual. My eagerness derives from my persistent desire to understand and overcome my chronic health problems. The apprehension is also routine, a feeling that increases with each added specialist, prescription, ointment, suggested diet, physical therapy, etc., to my ever-growing health record.
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 multiple specialists when health records are not easily accessible across disciplines.
I have recently been using a new online health record platform called Seqster to efficiently organize my health data from numerous doctors, specialists, and nutritionists. Seqster combines multiple data types, such as electronic health record (EHR), genetic, and fitness data in one secure place. Thus, it provides patients with a more comprehensive view of their health data. Seqster has recently updated their DNA labs to include other DNA processing platforms. On top of this, I have also been working with Katie McCurdy – a designer who uses her skills to create an easy-to-use process that helps patients “visualize” their own health histories.
I began my Pictal Health journey by working with Katie to fill out a Google Doc of my health summary, (including injuries, illnesses, life events, symptoms, mental health, treatments & procedures, and reflections). While filling out the information, I found that one of the most useful aspects was being able to sort the numerous treatments and procedures into categories of what helped, sort of helped, and didn’t help.
One of the reasons I decided to try Pictal Health is so that in future appointments, I can easily provide my doctors with a complete health timeline that reflects my previous medical records, physical and emotional state based on monumental life events, and changes in medication.
The visualization also includes other factors that are often not incorporated in the patient file a doctor refers to during an appointment. These additional factors include: supplements, vaccines, and tests done by functional medicine doctors.
While the final visualization is useful, and I look forward to bringing it to my upcoming rheumatology appointment, I actually found the process of creating the visual the most valuable aspect of this project. Though I had already created a personal health record using Seqster, I was unable to manually add records from any functional medicine doctors. However, with Katie’s help, I was able to sort through my large drawer of paper files from past functional appointments, and analyze it in conjunction with my conventional records.
I am curious to see how my rheumatologist will receive the visualization and how I will be able to use it further. Considering that very few patients take the time to sit down, compile health records, and analyze their own health records holistically, it isn’t surprising that doctors have even less time to do so. Therefore a one-page visualization can really aid in making appointments more efficient and transparent.
#spoonies: is this something you would take to your future doctor appointments?
Health professionals: would this information be useful for you in better understanding patients?
Stay tuned for a follow up post to find out how my doctor received the visualization.