Personal Experiments, Uncategorized

Seqster Creates Personal Health Record for Autoimmune Patients

Written by: Bonnie Feldman, DDS, MBA, and Hailey Motooka

Many patients, like myself, suffering from autoimmune diseases understand the struggle of having countless doctor and specialist appointments throughout the year. Symptoms of autoimmune diseases can vary significantly between individuals depending upon genetic, behavioral, and environmental factors. This spectrum of disease symptoms and severity often leaves a window of ambiguity for individualized diagnosis and care.

In other words, there is no such thing as a ‘typical’ patient.

Diagnosing an autoimmune disease can take, on average, 4.6 years. Slow or incorrect diagnosis can also be attributed to the disconnect in communication between specialists when health records are not easily accessible across disciplines. There are 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.

Introducing Seqster

This is where Seqster comes in. 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.

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Along with patients, Seqster collaborates with various partners including providers running research studies to health foundations. The mission is simple: improve health by empowering individuals to collect, own, and share their data.

And the process is even simpler… sort of. We will take you through my stepwise process of registering a new account, connecting my health data, and syncing DNA information using Seqster.

Step 1: Registering a New Account

I first encountered Seqster at the Health2.0 conference in Santa Clara where they expressed their support for helping autoimmune patients. On behalf of the community, they offered to include me as a beta tester for their platform. I received an invitation code from Seqster via email and entered it into the website.  

Seqster does not offer personal health record (PHR) trials for individual patients, but they do offer collaborations with foundations, providing open access to their platform for foundation members.

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Step 2: Connecting Medical Records

Once registered, the first step is to connect medical records by inputting the patient portal web address of your primary providers as well as login information for that particular health system.

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Initially, I had a difficult time connecting my records from UCLA Health so I emailed a team member from Seqster and received a response almost immediately. They quickly resolved my issue, and in less than twenty seconds my health records from UCLA were uploaded onto my dashboard.

The Seqster dashboard can be organized in two ways: by categorized cards and by a timeline.

The cards organize the health record by categorizing information into doctor visits, health conditions, immunizations, procedures, updated vital signs, and lab results. Under the lab results category, Seqster also pulls and displays any ‘Outliers’ lab results that do not fall within the normal range. This information, though often overlooked,  is extremely useful when aggregated together in a chronological list.

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Step 3: Connecting DNA Information

Nowadays, there are numerous DNA analytics companies, such as 23andMe and Ancestry.com that provide people with personal genomics information on health, wellness, carrier status, and ancestry. I personally use Vitagene, which was not one of the DNA labs featured on the list below.

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So I asked Seqster  to connect my DNA lab, Vitagene. Seqster promptly informed me that they could not access Vitagene’s API (application program interface) and therefore could not pull my DNA lab records.

As it turned out, I was able to download my Vitagene data locally onto my computer and analyze it through an external platform called Promethease (data processing, costs $12). I then provided Seqster with my Promethease information and I am currently waiting to see if my data can be connected this way.

Conclusion: Things I Like…

I think the concept of Seqster itself is simple, yet has the potential to have profound impact on improving diagnosis for autoimmune patients. Despite the small setback I had connecting my health data initially, I found the process to be very efficient and requires nothing more than a login and password to the health system patient portal. It does not take long for the information to sync and appear on the dashboard.

The way in which information is displayed is appealing and easily navigable, contributing to a captivating user interface. Seqster also emphasizes the fact that they do not sell data, which really makes it feel like all of the health data on the platform belongs to me.

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Conclusion: Things To Be Improved…

Due to the fact that Seqster is a company that is still in its early stages, there are still some gray areas surrounding external providers that must be connected to Seqster manually. I hope that as Seqster continues to grow, they expand their reach to include a broader range of health, DNA, and fitness providers

A limitation of all digital health record platforms, including Seqster,  is that many doctors, especially functional medicine practitioners, do not have online patient health records that can be accessed. Many records are still paper-based and cannot be added manually onto the Seqster platform.

Check out my next post as I continue to work with Seqster to provide the best possible platform for health record compilation and visualization.

To our readers: Have you tried any digital personal health records? If so, which one(s) worked best for you?

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