He experienced me at the assertion, “I believe overall health info is drugs.”
These have been the phrases of Ardy Arianpour, CEO and Co-Founder of Seqster, when sharing with me how his firm was established.
We fulfilled up last week at the DIA Europe 2022 conference (Drug Data Association) in the neat Square Convention Center in Brussels, Belgium (my existing home foundation for operate and lifestyle). It was a exceptional option to sit however with this on-the-go person with whom an hour used is the equivalent of 3 hours with most other folks.
Ardy and the group call Seqster “the working program for well being care,” a trademarked phrase.
Turbocharging, genuinely inspiring that bold statement is the adore of a son for his mother and father coupled with tech-innovation chops that could, in fact, at some point provide that audacious declare of being overall health care’s OS to fruition.
To start with, look at: the deficiency of interoperability between well being info, ensuing in silos, has plagued our capability to “operate” (that “O” in “OS”) in a easy style throughout the treatment continuum, from medical trials and investigation to patients’ self-treatment driving exceptional results.
Our want for facts liquidity has eluded us across the overall health/care ecosystem for also prolonged, notwithstanding American taxpayers’ $35 bn expense in EHRs relationship to the American Recovery and Reinvestment Act of 2009 that embedded the HITECH Act funding EHR adoption for hospitals and physician procedures.
Second, include into the combine: Ardy’s mother and father are both equally most cancers survivors and as he describes himself, he’s the “poster child” for loved ones well being issues. His personalized DNA led him to his career journey and adore of genetics.
Right after successful stints doing the job in genetics for nearly 20 decades, Ardy co-established Seqster with companions Xiang (Sean) Li and Dana Hosseini, fellow genomics veterans, and the trio hunkered down to de-fragment the very fragmented, siloed well being data ecosystem – emanating from massive-iron shut EHRs to pharmacy promises, lab data, wearable products, electronic imaging, DNA/ancestry data, and distant affected individual checking gadgets.
The workforce did the heads-down tough function building out the means to grab the knowledge from hither, thither, and yon in real-time, enabling researchers, suppliers, and diagnosticians to look at a longitudinal health and fitness profile of a patient: a detailed, 360-levels perspective of the full man or woman. That’s why Seqster phone calls this alternative “patient-centric interoperability.”
Now, let us ponder just one unique patient whose name is Eric Topol, MD. You really should know him for his do the job main Scripps Investigate Translational Institute together with his should-browse publications, The Patient Will See You Now, Deep medication, and The Imaginative Destruction of Medication. He also tweets his personal feedback on Twitter @EricTopol, which have come to be need to-click on insights into the COVID-19 pandemic from the inception of the public overall health disaster.
With that context, here’s some genuine-planet proof to contemplate: Dr. Topol’s experience with Seqster early in the company’s historical past led him to tweet the subsequent on 21 August 2018, demonstrating the precise tweet screenshot here:
“1st time I’ve been equipped to get my healthcare facts from 1985>present 4 well being methods @ScrippsHealth @UCSDHealth @ClevelandClinic @umichmedicine + @23andme + @fitbit + @MyFitnessPal with labs from diff’t programs all connected @seqster (making an attempt it <254 hrs). step in the right direction”
CBS News 8 San Diego covered a caregiver and cancer patient’s experience with a live shot of their thick binder, containing CDs with medical images and data from these various provider institutions laying on top of a pile of letters and lab test results.
The basic (well, not-so-basic) operating system starts with the electronic health record (EHR), accessing data for the patient: allergies, conditions, immunizations, labs, meds, procedures, vitals, in real-time and in a continuous longitudinal timeline.
For wonky-tech readers, this involves using Seqster’s proprietary technology (FHIR+) to enable the flow of patient information from once-siloed data locked into legacy systems and wearable tech clouds.
Seqster’s March 14th press release, Seqster Launches Developer Portal Delivering Longitudinal Health Data and Patient Engagement Directly Into Life Science Enterprise Workflows, announced the company’s developer portal that automates patient data across their health journey — from pre-diagnosis, diagnosis and treatment, to study participation — as well as continuous long-term monitoring for outcomes research and ongoing observation.
This capability is attracting pharmaceutical and life science companies, health care providers and research organizations to take a closer look at Seqster’s offering.
UBC is among the organizations partnering with Seqster to enable patient engagement and interoperability. UBC is evolving from site-based clinical trial research to decentralized clinical trials (DCTs). This will enable UBC to modernize study designs, “capitalizing on patient mediated medical record release,” Aaron Berger, Executive Director, RWE, of UBC explained in the project’s press release. Aaron called this “a game-changer for our clients,” who are pharmaceutical, biotech and other life science innovators. Note that UBC’s tagline is “Patients first, powered by evidence.””
In summing up the patient-centered interoperability goal, Ardy summarized: “We’ve created the Mint.com of health data.”
Health Populi’s Hot Points: Many of my beloved and brilliant colleagues are convening this week at HealthDataPalooza and the National Health Policy Conference in Washington, DC.
They are brainstorming how to solve the challenges of health equity, interoperability, patient engagement, and digital literacy, among other barriers to making health care better for all health citizens. Among those informing discussions at the meeting are representatives from ONC, who will be discussing the latest 21st Century Cures Act interoperability and patient access guidelines — which Seqster embraces in their operating system.
One quiet theme I teased out of the Twitter-conversation during the meeting is the concept of data colonialism — explained here in a just-published essay in the Stanford Social Innovation Review.
“All too often, social sector practitioners, including researchers, extract data from individuals…for their own purposes, and do not even make it available to them, let alone enable them to draw their own conclusions from it. With data flows the power to make informed decisions….If we are truly committed to decolonizing the practices in aid, then we must also examine the ownership and flow of data.”
From the SSIR explanation, I highlight key phrases for making health data flows more inclusive and impactful:
“Data is not a finite resource in the social impact sector, yet that is how we operate. We believe it is this reflexive tendency, rather than an insidious intent to keep communities down, that underpins data colonialism today. Sharing data would accelerate shared impact by aligning incentives and highlighting solutions that truly work. The sharing of aggregated and anonymized data sets can bring clarity to complex environments based on shared insights to work toward continuous improvement to existing systems.”
Seqster is working to solve this very barrier to peoples’ optimal health and, ultimately, their life expectancy as we are faced with tough diagnoses. Ardy and team did so for his father one day, they may well do this for you or me. This is the promise of personalized medicine.