3 strategies to manage digital health data

Digital health data is growing at such an astronomical rate that its volume is measured in exabytes – 2,314 exabytes, by one projection. (For the record, one exabyte = one billion gigabytes; and “all words ever spoken by human beings” would need 5 exabytes of storage if saved as text.) The value of this digital health data is as vast as its volume – but only if it can be unlocked, managed, and ultimately shared for the greater good.

Healthcare costs, meanwhile, continue to skyrocket, with estimates of the U.S. health spend reaching up to $6.2 trillion by 2028. Traction for bending back such a powerful cost curve has been laid at the feet of value-based care (VBC) a ‘pay for performance’ model whose success is increasingly being transacted through the tracking of healthcare biometrics. Digital health platforms harnessing the data collected and analyzed through remote patient monitoring devices are the way forward to optimize patient care, improve wellness, while simultaneously fulfilling the goals of VBC.   

Data, Data, Everywhere
Digital capabilities are now built into a wide range of healthcare devices, from diagnostics and medical imaging machines to surgical instruments and orthopedics. All these connected devices generate a continuous stream of health data purposed for patient support, predicting, or preventing poor outcomes and otherwise curating perspective for greater therapy insights and improved health. There is a lot of data out there and it’s estimated to be growing by a zettabyte (i.e., a trillion gigabytes) every year.

So what do we do with all this data? Well, the first part of the answer can be hinted at with another question – how do we access it and then share it?

Destination Interoperability
Healthcare has been grappling with data interoperability challenges for decades; at long last, the industry is at the cusp of major breakthroughs. While the more recently collected, clean and well-structured Internet of Medical Things (IoMT) data is being uploaded and secured in today’s cloud computing infrastructures, legacy patient medical records (EMRs) are a puzzle that has been in need of solution.

Prescriptions, insurance claims, physician notes, medical records, medical images and other diagnostics results, genetic testing and more are being stored in one way or another digitally. This clinical information has been buried in siloed, cumbersome systems that are scattered across hospitals, clinics, urgent care centers, pharmacies, physicians’ offices and labs. Physicians spend hours trying to piece together the information they need to treat patients, and patients and consumers struggle to understand their health information across a maze of disconnected “portals.” Complicating things, particularly in the U.S., is the degree to which much of the “ownership” in EMRs is concentrated in a very small set of vendors. The two big names in the space, Epic and Cerner, control by some estimates almost 50% of the total EMR market.

The Future Looks Bright
Today, healthcare’s greatest hope for achieving interoperability once and for all is per HL7’s FHIR (Fast Health Interoperability Resources), an internationally recognized data format standard for EMRs. Data collected directly by fitness trackers, such as the Apple Watch or mobile phone apps, are also essentially transacted via this standard.

We are now at a point where a single ‘language’ of exchange is achieving scale, ballasted by the accelerating and continuous zettabyte-volume flow of comprehensive health data and biometrics. Consider as well, recent US government actions (the 21^st Century Cures Act from 2016 and the associated rules released in March of 2020 by CMS and the ONC) as additional proof that there’s much to be optimistic about.

Indeed, perhaps the most exciting feature, of data interoperability across the partner ecosystem is that ideas from all over the world can be built and tested with the FHIR standard, delivering on the loftiest of goals for population-wide health strategies and potentially eradicating the devastating toll of chronic disease in all areas of the globe.

Here are three must-haves for participants across healthcare to make the most of digital health data:

1. Make it Available
   Get on the interoperability train. Innovation is being driven by FHIR standards supporting application programming interfaces (APIs) for exchanging EMRs and helping to propel society toward the goal of full interoperability, but the effort requires the collaboration of all stakeholders. The good news is that with FHIR, the industry is building upon a true, stable standard across the board which will be a big boost for engaging developers and extending interoperability.
2. Make it Actionable
   Don’t be risk averse. Enrich your current offerings with the transformational capabilities provided by Cloud computing, Big Data and Artificial Intelligence (AI). And don’t go it alone. Now is the time to seek partnership with professionals across a spectrum of specialties to fully capitalize on the data being generated in the healthcare ecosystem and build upon it further. Seek out and enlist the collaborative support of all of these:

• • Data architects
  • Data analytics
  • Ethnographic research (to better see the world through your customers’ eyes)
  • Clinical SMEs

Think of it this way. Comprehensive understanding of an individual patient’s genetic make-up coupled with broad insights to their environment, medical conditions and social surroundings creates a profoundly powerful data set for the patient, system, and population.

3. Make it Secure
   The increased ubiquity and seamlessness of data exchange triggers a parallel wariness about those entrusted with it – which includes physicians, insurance companies, hospitals, as well as healthcare’s newest players, consumer and technology-focused firms like Apple, Google, Microsoft and Amazon. Everything that has been worked for to gain the ideal of shared data and all the promise of improved precise medicine can be destroyed by simply being imprecise about its stewardship.

The people served by healthcare deserve the best, but “the best” in healthcare is increasingly not defined solely by better therapies, but rather by better customer engagements and user experiences, not the least of which is assured privacy. The health system can seem overwhelming, so everything that can be done to make the experience more accessible, more personal, more convenient and with less friction, the better. But before even any of these objectives are targeted, cultivating and sustaining patient trust is priority no. 1.

Peter Lee, corporate vice president of Microsoft Research and Incubation, commented during the 2019 Health Datapalooza in Washington, D.C. – “There is a tension between the need and desire to create new engagements with [health] consumers on the one hand, and not be overly creepy and create the specter of surveillance on the other.”

This is the balanced trajectory the industry must follow. The future of healthcare needs to be built upon partnerships bound together in trust. Amazing innovations and technology are energizing the industry but at the core of the mission is restoring “care” to healthcare, making it possible for patients to maintain the most productive, informed, and personal connections with their providers. Digitized health information is lighting the way, lowering costs, and offering us all hope for a healthier tomorrow