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Here’s what needs to happen for digital health care information-sharing to actually become a successful reality

Aneesh Chopra outlines what’s still missing.

Former U.S. Chief Technology Officer Aneesh Chopra Ethan Miller / Getty

This is a contributed post by Aneesh Chopra, president of CareJourney and former U.S. chief technology officer in the Obama administration. It is in response to a Recode op-ed by Jared Kushner, senior adviser to the U.S. president, and Seema Verma, administrator of the U.S. Centers for Medicare & Medicaid Services, which argues for progress in digital health care data.


A vision delivered needs relentless focus on execution

Jared Kushner and Seema Verma’s vision of a patient-centered health care information-sharing ecosystem through the MyHealthEData initiative drew near-universal praise, including my immediate take following last Tuesday’s announcement.

In the days that followed the launch, a multi-stakeholder coalition, of which I am a part, pledged to enable consumers to access all of their health and coverage information to share and use as they see fit. The U.S. Centers for Medicare and Medicaid Services (CMS) courted more developers to aid 53 million Medicare beneficiaries in navigating the delivery system. And the Department of Veterans Affairs recruited an initial cohort of 11 leading health systems to join in an “Open API Pledge” to push the industry faster toward a common language that can work for doctors and hospitals regardless of which particular IT system runs on the back end — including a new method for accessing group records when permitted.

Aside from the technical and regulatory actions, the initiative represents a fundamental change in the country’s default position when it comes to health data sharing. That is, from a focus on breaking down silos through direct connections across our fragmented health care system to a new paradigm where patients have the power to aggregate and share their records via the applications and services that can now compete to help them make best use of it.

This means safer care for our loved ones as clinicians use historical data to more accurately diagnose problems and prescribe interventions that won’t inadvertently do harm. It also means more efficient care as they order fewer repetitive tests or unnecessary hospitalizations, which contribute to the estimated 30 percent waste in the health care delivery system.

Alas, there isn’t an “easy” button to make it happen magically with policy statements, as we witnessed following President George W. Bush’s 2004 State of the Union pronouncement that within a decade, most Americans would have electronic access to their complete health information. This is a practical and achievable vision.

In that context, I see three areas we must focus on as a nation to realize Jared and Seema’s vision:

Culture

The Obama Administration’s initial rules qualifying hospitals for their share of $37 billion in incentive payments required them to make electronic copies of health information available when patients discharged within three days, a relatively straightforward technical assignment that 93 percent have successfully met at last count. However, the rules allowed hospitals to file an exemption should patient’s not ask. A more sobering number is 53 percent, the share of hospitals reporting, under penalty of perjury, that not a single patient requested an electronic copy of their discharge instructions. I wonder whether any of those patients knew that they could even ask.

Pace of change

Since President Bush put us on the path of electronic health records, we’ve successfully digitized most of the manila folders that we used to see in our doctor’s offices, but only standardized a fraction of that information into a machine-readable language that other doctors, hospitals or care teams’ IT systems could interpret and use. We need more industry commitment to standardize the complete health record as we point that information to any app of a consumer’s choice. To that end, I’m hopeful CMS’s plan to incentivize health plans contracting with the government via changes to Star ratings and the VA’s “Open API Pledge” will bring more well-capitalized sectors to the center of this effort.

Empire strikes back

Jared and Seema chose to share this vision with an audience of thousands of health IT companies, developers and purchasers, many of whom profit from today’s friction-filled health data sharing economy. Success for MyHealthEData will undoubtedly result in lower costs — and thus less revenue — for firms whose business plans call for monetizing patient data, rather than competing on how to best help patients, clinicians and the care teams who serve them make the best use of that information. Some of those firms will respond in a manner that will violate new rules against “information blocking,” while others might ​skirt below that threshold while still adding excess transaction fees or threatening developers with intellectual property violations tied to data use.

Overcoming these barriers will not only take a “whole of government” approach, as Jared and Seema called for, but a true national movement to answer this call — so that a lower-cost, higher-quality health care system is within reach for all Americans, without a moment to waste.


Aneesh Chopra is the president of CareJourney and former U.S. chief technology officer in the Obama administration. He is the author of “Innovative State: How New Technologies Will Transform Government.” He was also a Recode 100 advisory board member in 2017.


This article originally appeared on Recode.net.