Many patients like myself, who suffer from autoimmune diseases, struggle with countless doctor and specialist appointments throughout the year. Also, symptoms vary so much between individuals depending upon genetic, behavioral, and environmental factors. Keeping track of encounters and symptoms is hard enough, but now add diet, sleep and fitness tracking data. How to keep track of your own data? What if there were a way to organize all your health records? Seqster offers a platform to integrate multiple health records for autoimmune (and other chronic disease) patients.
We are drowning in our own data
The wide spectrum of autoimmune disease symptoms and severity demands individualized diagnosis and care. Yet, diagnosing an autoimmune disease can take years of hand offs between primary care physicians and specialists. The communications disconnect between specialists, primary providers and patients is one reason for slow and incorrect diagnoses. This is worse when health records are not easily accessible across disciplines. There are a few providers trying to remedy this issue by creating multi-specialty care centers. These include, for example, the Allegheny Health Network Autoimmunity Institute, but such institutes are few and far between.
Enter Seqster to integrate health records
This is where Seqster comes in. I first encountered Seqster at the Health2.0 conference in Santa Clara where they expressed their interest in and support for helping autoimmune patients. Seqster designed its SaaS platform to integrate multiple health records for autoimmune and chronic disease patients or anyone else. Seqster’s platform integrates multiple data types one secure place. For examples, electronic health records (EHR), genomics and fitness data. This can provide patients a more comprehensive and easier to understand view of their health data.
Seqster collaborates with various partners, including providers, clinical researchers and health foundations. Their mission is simple: improve health by empowering individuals to collect, own, organize and share their health data.
And the process is even simpler… sort of. We will take you through my step-wise process of registering a new account, connecting my health data, and syncing DNA information using the Seqster platform.
Step 1: Registering a New Account
When I met Seqster at the Health 2.0 Conference, I expressed interest in how their platform could help autoimmune patients. On behalf of the autoimmune community, they invited 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. however, they do offer collaborations with payers, providers, clinical researchers, and consumer health organizations, and provide open access to their platform for foundation members. Ask your provider organization if they work with Seqster.
Step 2: Connecting medical records
Once registered, the next step is to connect your medical records by inputting the patient portal web address of your primary providers as well as login information for those particular health systems.
At first, I had a difficult time connecting my records from UCLA Health. I emailed a team member from Seqster and received a response almost immediately. Seqster quickly resolved my issue, and in less than twenty seconds my health records from UCLA uploaded onto my dashboard.
Once your data are uploaded, Seqster integrates health records for autoimmune patients and displays them on a dashboard. Seqster organizes the dashboard in two ways: by categorized cards and on a timeline.
The cards organize health records 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 ‘Outliers’. For example, lab results that fall outside the normal range. This information, though often overlooked, is more useful and much easier to see when the user sees it in a timeline.
Step 3: Integrating DNA data
Nowadays, there are many 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.
So I asked Seqster to connect to 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.
Things I like…
I think the concept is elegant. Seqster, by integrating health records for autoimmune patients could help coordinate care and improve diagnosis. I found the process efficient, despite the small initial setback connecting my health data. It 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. I can easily see how Seqster could help autoimmune patients better manage health records and data.
The information display 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.
Things to be improved…
Since Seqster is still a new company, there are still some gray areas. Most notably, external providers must still connect 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, still do not have online patient health records that can be accessed. Paper-based records cannot be added manually onto the Seqster platform.
Nevertheless, having Seqster integrate autoimmune health records could be a game-changer for many of us.
Written by: Bonnie Feldman, DDS, MBA, and Hailey Motooka
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?
