As we wait for final rules that will enable consumers to freely access their health data, electronic health record (EHR) giant Epic is saying breaking down the silos where this information lives will create a privacy hazard for patients.
While privacy concerns over health data sharing are always legitimate, they can’t stem the tide of the inevitable: Patients and consumers are demanding access to their data, and new proposed government rules supporting a consumer-directed, seamless flow of medical information will likely go into effect as soon as this month.
When they do, it will accelerate the race among technology companies to offer consumers the end-to-end healthcare experience and outcomes we’ve all been missing. At the same time, they will force the government to move quickly to establish a new privacy framework that will replace HIPAA’s limited reach and work to benefit all stakeholders.
We could be in for a wild ride. But when the dust settles, we will have what we should have had all along: a healthcare system where consumers sit at the center and are empowered by ownership of their own health data.
A snapshot of health IT's bumpy history
In 2004, the Office of the National Coordinator for Health IT released a framework for strategic action, the decade of health information technology: delivering consumer-centric and information-rich care (PDF).
I worked for David Brailer at the time, who was appointed by President George W. Bush to be the country’s first information “czar” for healthcare. Dr. Brailer is still an advocate for information-sharing, recently calling on healthcare CEOs to lean into, not away from, the opportunity to engage the patient in a more meaningful way. If healthcare CEOs fall short, tech companies will fill the void (more on that later).
We envisioned a system where important health data would follow the individual by building interoperability into EHRs from the start—a vision that tragically has yet to be realized.
We imagined health data would function as a powerful currency for consumers, but to date, this valuable asset has stayed in the hands of EHR companies who keep it under lock and key.
Consumers will soon hold this currency in their hands for the first time. If they seek to understand and apply their health data like they have with their genetic information—consider the explosion of tech companies like 23andMe and others—we’ll see dramatic shifts in the health tech landscape.
Consumers are most likely to share their health information with companies that have proven they can offer a powerful, secure and user-friendly experience: companies like Amazon, Apple, Google and a host of established and emerging technology players.
We must now endeavor to build the necessary security and privacy frameworks that ensure the consumer will always be protected and in control of their personal health information.
Where to go from here
We’re entering a new era, one where healthcare providers, payers, solutions providers and technology companies will create a superior healthcare experience and deliver improved patient outcomes.
The days of medical information being walled off and guarded by EHR vendors are coming to an end.
We can expect three things to occur once the rules are finalized:
- EHR companies will see their business models disrupted: As consumers control their health data, the silos created by EHR companies will gradually erode. This will change these companies’ business models permanently. No longer the central gatekeepers of the country’s medical information, EHR companies will scramble to build new capabilities and services in a bid to remain important players in healthcare.
- Technology companies that build trust will earn their moment in the sun: Consumers have shown a willingness to share sensitive information with technology companies in exchange for insights about their health. With new rules in place that turn loose volumes of health data, incumbent tech giants and newcomers will compete to create compelling new healthcare experiences and superior outcomes. Consumers will decide the winners by preferentially sharing their data with companies whose products and services are both transparent and secure.
- New privacy laws must take shape: As tech companies compete to win the trust of consumers, the government will develop updated rules of the road for our new, consumer-centric health system. This effort is already underway thanks to multi-stakeholder groups like the CARIN Alliance and the work that the Robert Wood Johnson Foundation is doing with Manatt. We can expect these efforts to ramp up quickly.
HIPAA doesn’t cover many of the new digital products and services that can benefit consumers, but that doesn’t mean consumers and technology companies cannot hold this data. It means we need to modernize HIPAA.
When these trends come to pass, it will be the consumer—newly empowered with their health data—who will drive our country toward value-based care. Top-down decisions by healthcare providers, insurers and government agencies haven’t accomplished this vision—consumers can and will.
As a consumer, a health tech entrepreneur, a mother and a former federal and state official, I am eager to bear witness as consumers take the driver’s seat, which was the intention all along.
Lori Evans Bernstein is a co-founder and the president and chief operating officer of HealthReveal. She was a senior advisor to the first National Coordinator for Health IT in the U.S. Department of Health and Human Services and served as deputy commissioner of the New York State Department of Health's Office of Health IT Transformation.