Owning Personal Health Records Is the Key to Medical Innovation

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COVID-19 has led to a surge in telehealth – phone visits and remote monitoring of physical and emotional conditions using wearable devices. There is much talk about how the silver lining of the pandemic is the explosion of virtual medical care and how it can increase access to treatment.

But telehealth and virtual coaching are not enough. Doctors and patients still work with a surging amount of health information that is often fragmented and incomplete. As a result and as Eric Topol writes in his book Deep Medicine:  patients exist in a world of insufficient data, insufficient time, insufficient context, and insufficient presence. Or, as I say, a world of shallow medicine.

Though we are generating more data than ever, it is not being used to increase the accuracy, speed, and predictiveness of medicine.  Specifically, we are not organizing and analyzing information around the lives of patients to improve diagnosis and treatment. 

The proposed solution to this problem is something called interoperability between the information systems of different health systems. In March of this year, the Department of Health and Human Services required any institution that collects patient data of any kind to make it available to patients who, in turn, would be able to generate a personal health record. At present, hospitals, pharmacies, physician offices, nursing homes and labs, and fitness-monitoring companies do not make individual health records available to people. 

That means doctors don't have a complete picture of who we are.  They can access health records from other sources, but it’s time-consuming and expensive. Moreover, no one institution is going to create a personal health record for us or anyone else. Instead, patients will have to assemble a health record on their own. We’re in 2020 yet how health records are assembled is more like medieval monks’ hand-copying bibles rather than space age efficiency.

Gutenberg's printing press made information widely shareable by making it easy and affordable for the masses to own copies of the material.  As Matt Ridley notes in his new book: How Innovation Works, "after Gutenberg invented the printing press in the 15th century, the technology was transformed into a mass media of Facebook-like power by Martin Luther." 

Health information's Gutenberg is Ardy Arianpour, the founder and CEO of Seqster.

Seqster's technology is making health data interoperable and shareable by making ownership of data fast, easy, and affordable. The San Diego-based company allows organizations and individuals to aggregate medical data, genomic profiles, labs, imaging from any doctor's office or health system, as well as personal health information from connected devices. Seqster does this by generating personal health records that patients actually can control. 

Arianpour calls personal health records, ‘medicine for medical care’.  That is, creating personal health records makes better, deeper medicine possible. Individual ownership of data – as with any other asset – promotes sharing. Without the sharing of data, there is no evidence. The faster data or information can be freely shared, the more rapid evidence is generated.  Evidence is then converted into knowledge by more sharing, testing, and applying. 

As Ridley notes, progress and prosperity come with innovation driving down the time cost of meeting a need.  Seqster drives down the time and cost of generating personal health records.  It promotes sharing by linking the right to own your data to the actual "deed" or "title."

Such sharing will lead to significant experimentation and innovation in health care.  It will increase multifold the use of machine learning technology to guide diagnosis and treatment.  It will stimulate the growth in virtual care. And Seqster will spur the use of computer-generated models of disease, reducing the cost and time of developing new medicines.  More broadly, solving the interoperability problem and unleashing the value of personal health information will lead to a longer life and greater well-being. In turn, that will stimulate growth in other industries as well.

There is one caveat. Interoperability without data ownership or the freedom to share information will stifle innovation.  Seqster is often mentioned by interoperability proponents in the same breath as Google. The two companies couldn't be more different in a crucial way. Whereas Seqster aggregates data by giving patients control over their health records, Google does so by gaining control over the same information.

Indeed, concern about Google's approach to patient data grew when it was revealed it had struck a deal with Ascension Health System to get a hold of tens of millions of patient records, including full names, test results, and diagnoses." The public and regulators alike were alarmed by how quickly and covertly it connected its platform to medical records of millions of patients. Indeed, Google is still seeking to secure access to millions of other patient health records.

Google is now appealing a federal court decision barring unauthorized use of interoperability software to gobble up user data for any purpose. It claims that their ability to aggregate data is essential to health care innovation. Google wants to use interoperability to control markets than compete in them. 

By contrast, Seqster solves the interoperability issue necessary to support and ignite the shift to high-quality digital care.  And by achieving this connectivity by providing everyone the ability to own their own health records, Seqster is making freedom – and innovation – possible.

Robert Goldberg is Vice President, Center for Medicine in the Public Interest and co-host of the Patients Rising podcast.



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