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Patient-Centric Approaches to Managing Digital Health Data: Updates from the Molecular Medicine Tri-Conference

By Melissa Pandika

March 12, 2020 | The rapid emergence of electronic health record (EHR) systems, genetic sequencing services, wearables and other digital health tools in recent years has generated more patient data than ever. At the Molecular Medicine Tri-Conference in San Francisco last week, the “Connected Patient: Integrating Patient Data and Healthcare” session gathered industry leaders to discuss approaches for managing this data deluge to ensure patient empowerment, safety and engagement.

“The biggest problem out there is data silos,” said Ardy Arianpour, CEO and co-founder of health data management company Seqster. Data silos amount to a $35 billion per year problem, he explained, resulting in inefficiencies across the healthcare continuum. Health records are often scattered within and across provider settings so that patients lack a consolidated, long-term record that would enable providers to monitor them on their health journey. There’s also no way to share real-time health data with physicians, insurers, hospitals, or clinical researchers.

To tackle these inefficiencies, Seqster — which Takeda Pharmaceuticals invested in last month, Arianpour noted — consolidates EHR, fitness, genetic, and other data. Not only does it integrate data points into a longitudinal data model to track disease progression or recovery, it allows users to share data, at patients’ consent. “We’ve done the dirty work that no one wanted to do,” standardizing and harmonizing data from Epic, McKesson, 23andMe, and more, Arianpour said. Pharma companies, payers, and providers alike can license Seqster’s technology.

“We’re bringing in high-quality data for the first time, adding it to real-time data and combining it with some sort of engagement platform,” Arianpour explained. He added that “all this data is person-centric. We’re leading the nation in person-centric interoperability.”

Arianpour shared a recent local news broadcast from San Diego, where Seqster is based, about how the company’s technology merged health records from the numerous medical providers sarcoma patient Daniel Stern was seeing across the United States. Before Seqster consolidated his records in one place, his wife, Donna, had carried paper copies of them in a massive binder.

“We all have interoperability stories,” Arianpour said. “All of this affects precision medicine in a whole new way, and if we can’t bring all the health data in one place, we can never actually make precision medicine happen.”

Timothy Wright, chief strategy officer of telehealth company InTouch Health, dove into how digital health intersects with patient safety, posing the question: When does IT become healthcare? He played a video of Mayo Clinic physicians’ simulating neonatal resuscitation while consulting another physician about the procedure via off-the-shelf video conferencing. The video was part of a case study of such technologies.

“What if that equipment didn’t work?” Wright asked the audience. Indeed, the stakes would be much higher if, say, Skype, failed during a medical consultation than during a conversation between a parent and a child away at college. But is Skype an IT or healthcare tool?

The Mayo Clinic case study found that providers were unable to establish a video connection on the first attempt in 31% of cases — and that the video conferencing solution failed to connect altogether 9.5% of the time, Wright noted. According to end-user assessments, the audio or video was poor or unusable 44% of the time. These are troubling findings, given that 76% of US hospitals rely on telehealth.

Even more troubling, the 21st Century Cures Act of 2016, which eliminated FDA oversight of telehealth devices, categorizing them as data transfer tools rather than healthcare tools. Wright cited several other digital health technologies that are unregulated by the FDA, from wellness smartphone apps to e-prescribing software that forwards prescriptions from the point-of-care to a pharmacy. All of this begs the question: Who is regulating patient risk when it comes to digital health?

Wright then summarized InTouch Health’s guiding principles to developing solutions for safe, patient-centric telehealth. These include a quality management system for all aspects of product design and development; logging of all information system events to allow oversight; redundancy through backing up data and yearly testing of backups; and round-the-clock monitoring to spot and address issues before they affect patient care. InTouch Health also ensures that data remain secure and business systems continue to run even if a disaster occurs and, in fact, requires vendor to set up a disaster recovery plan.

But Wright emphasized that providers also carry responsibility for patient safety. He suggested a few questions for them to reflect on, such as: How do you think about patient safety? How do you integrate your data? How do you know if you’ve failed, and what can you do about it?

“Success for digital health is healthcare IT, but we have a responsibility,” Wright said. “We’re responsible for building that future, and making sure it can move fast and we don’t screw it up along the way.”

The final speaker of the session, Mike McSherry, CEO of Xealth, shared how the digital prescribing and analytics company’s platform allows clinicians to prescribe digital health tools within their EHR systems, foster provider and patient engagement with such tools.

Indeed, digital health remains extremely underutilized, McSherry said, with even digital therapeutics leaders having poor market penetration. Some reasons include a lack of clinical workflow integration, clinician EHR burnout and low patient engagement. (Patients might hesitate to open an email from a digital health brand, for instance, especially if they’re unfamiliar with the brand.) Plus, providers aren’t compensated for adding to their workload, further disincentivizing them from incorporating digital health tools into their practice.

Xealth’s platform overcomes these obstacles by allowing providers to order digital health tools, deliver them via the patient portal and monitor patients’ engagement with them, all within the EHR. If a clinician recommends a tool to a patient, for instance, the patient receives an email notification from the hospital system, not the digital health brand, making them more likely to use it. Xealth also allows users to monitor patient adherence via a one-on-one patient clinician view, digital health service line-level view, and even a system-wide view The hospital system chooses the digital health brands, while Xealth integrates them. “Think of Xealth as a power strip,” McSherry said. “All third parties plug into us,” not the hospital system’s IT department.

Although the approaches discussed in this session covered a wide breadth of topics, each emphasized putting patients first. Digital health tools are intended to give patients more control over their health; managing the data they generate through patient-centric approaches like the ones discussed can ensure they do so not only in theory, but in practice, as well.

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