Written by: Bonnie Feldman, DDS, MBA, and Hailey Motooka
For many years I have seen countless doctors and specialists—one of the many collateral effects of living with an autoimmune disease. Symptoms of autoimmune diseases can vary significantly between individuals, depending upon genetic, behavioral, and environmental factors. Thus, diagnosing an autoimmune disease takes, on average, 4.6 years. Slow or incorrect diagnosis 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, but such institutes are few and far between.
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 electronic health record (EHR), genetic, and fitness data in one secure place, providing patients with a more comprehensive view of their health data.
In a previous post, I documented my initial experience using Seqster to connect my medical information on a personal health record. Since then, Seqster continues to improve by implementing several debugging updates, and by the inclusion of intermediary DNA processing platform Promethease.
My efforts to connect my DNA data the first time around, were unsuccessful, since my DNA lab – Vitagene – was not one of the labs supported by Seqster. I was, however, able to download my raw DNA data from Vitagene and process it online through Promethease. Promethease is a literature retrieval system that builds a personal DNA report based on connecting a file of DNA genotypes to the scientific findings cited in SNPedia.
Promethease is used by numerous other DNA testing services, including 23andMe, Ancestry.com, FamilyTreeDNA, Genos etc. I brought this to Seqster’s attention, and they were quick to respond. Now, you can connect data from Promethease simply by inputting login credentials, allowing Seqster to import the files directly.
I am continuously impressed by Seqster’s willingness to listen to users. It shows that they truly value patient centricity, and are willing to accommodate a patient’s wants and needs accordingly. I am eager to see how Seqster continues to expand upon their patient health record platform.
For future directions, I am currently looking to apply 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, keeping track of how all these factors connect to each other is a completely different story. These variables are constantly changing, creating a complex, dynamic health story that is not only difficult to keep track of, but also difficult to articulate to others.
I am currently working with Pictal Health founder Katie McCurdy to create my health story, and am eager to share it with you all once it is finished.
To our readers: Have you tried any personalized genomic testing? If so, which one(s) did you like best?