“Data is the new oil,” British data scientist Clive Humby once said. “It’s valuable, but if unrefined it cannot really be used.”
I thought about that line recently when I met with the chief medical officer of a large health system. “I don’t want more data,” she told me, “we are already drowning in it.”
Across the nation, we are making progress in exchanging health data. But if it isn’t refined and turned into insight, it does no one any good. That’s why health information exchanges (HIEs) — platforms that help coordinate care by allowing data sharing among various provider organizations and health plans — are stepping into a new, important role focused on bridging the gap between data overload and a data-driven, learning health care system.
During the federal government’s third Interoperability Forum in Washington, D.C., this summer, I convened a group of experts at the intersection of health care and technology, including Deven McGraw, chief regulatory officer at Ciitizen, and Josh Mandel, chief architect at Microsoft Healthcare. We focused our conversation on the role of health information exchanges in a world where access to data is less of an issue and data overload, analysis, and insight delivery are becoming the primary concerns.
What emerged from this discussion was how the role of the health information exchange has shifted from a “hunter and gatherer” approach — finding and moving data from one place to another — to a “cultivator” approach focused on curating and analyzing data and delivering insights where and when they are most needed.
New functions for the health information exchange
When I co-authored a 2012 article on health information exchange with several of my colleagues in the Office of the National Coordinator for Health Information Technology, the biggest hurdle the health care industry faced was simply sharing patient records across disparate health technology systems. We needed a common way to do this so each organization wasn’t creating its own approach to sharing data.
To a large extent, the problem of exchanging data in common and predictable ways is now on the way to being solved. Today, millions of records are shared across national and regional networks. In addition, new API standards are bringing health care data sharing into the modern age.
The urgent issue for health care today is managing and making sense of the sheer volume of data — whether it is from electronic health records or from more nuanced social determinants data like access to safe housing and healthy food — and then delivering insights directly to those who need it. The role of data steward is increasingly the job for health information exchanges. Here are a few examples that illustrate how this important role is evolving:
Flagging actionable insights for care teams. HIEs identify patterns and problems that clinicians and public health officials might not readily see in volumes of data or that aren’t evident in just the small, limited slice of data held by one organization.
Cincinnati’s Health Collaborative, for example, tells physicians how much radiation an individual has been exposed to before they order imaging studies to help prevent the harmful effects of excessive radiation. CRISP, a health information network serving Maryland and the District of Columbia, notifies public health and care teams when individuals experience overdoses so they can reach out in this critical moment and offer needed support.
The delivery of timely, data-driven insights to care teams enables smarter, real-time care that is grounded in doing what is right for specific patients at particular moments in time.
Integrating diverse data. Health information networks can pull in data from diverse sources, integrate it, and then synthesize it into usable information. This allows providers to more effectively scan their patient populations and identify individuals who need extra support or care. Two health information exchanges, Manifest MedEx, the California nonprofit I lead, and New York’s Healthix, for example, aggregate and integrate insurance claims and clinical data for more than 40 million patients combined. This integration brings new insights to clinicians and population health teams, such as predicting whether a patient is at risk of a hospital stay or hospital readmission or identifying which prescribed drugs were picked up by patients.
Reducing the quality reporting burden. Quality reporting — the hard work that health care organizations must do to show how their care stacks up to national and state-specific guidelines — is an essential component of health care improvement, but it brings complexities and burdens for health plans and providers alike. For plans, the annual ritual of “chart chasing” — sending teams of nurses out to provider organizations to review patient charts — to report on and improve quality scores is a pain point for everyone involved.
To address this problem, the Indiana Health Information Exchange and other HIEs are taking on the burden of collecting patient records needed for quality reporting to reduce the operational burden for both health plans and providers. In addition, the Massachusetts eHealth Collaborative is helping physicians in 34 states extract clinical data from their electronic health records and then track and report quality measures derived from this information.
Using policy to accelerate interoperability. Health information exchanges play key roles in shaping policies at the national and state level, and also educate partners on today’s and tomorrow’s expectations for data sharing and patient privacy. As an example, the New York eHealth Collaborative develops state policies to align the investments and priorities of multiple health information networks across the state. On a national level, Manifest MedEx recently teamed up with technology leaders and other health information networks to advocate for health information sharing provisions in proposed regulations from the Centers for Medicare and Medicaid Services, including the requirement that hospitals alert community providers when patients are seen in the hospital.
According to a survey by the Strategic Health Information Exchange Collaborative, 92% of the U.S. population is served by HIEs. These networks have evolved and are now leading the charge in curating and making sense of vast reams of data and delivering insights to those on the front lines of patient care. Serving as a foundational backbone of health care improvement, health information networks are helping our health care system transition from reactive to proactive and from redundant and wasteful to smart and cost-effective.
Claudia Williams is the CEO of Manifest MedEx and a former senior adviser for health innovation and technology at the White House, where she helped launch President Obama’s Precision Medicine Initiative.