Data sharing in health care is complicated. Industry executives discuss how they’re thinking about improving and using it

Getting a patient’s often fragmented health care data organized into one complete record is the dream for many in the health care industry. But achieving that ability to seamlessly collect, share, and collaborate on data across different systems is challenging—and health care executives are increasingly thinking about how to make data collaboration more functional for patients’ and the broader public’s good.

“It’s part of our responsibility, I think, as health care leaders to start asking the questions of: how can we use it more intelligently, to build trust, to connect communities, to solve social challenges?” Amy Wykoff, the vice president of product management at IBM Watson Health, said at Fortune’s Brainstorm Health conference in Marina Del Rey, Calif. on Wednesday. “We’ll never have one record in the U.S., but there’s individuals who share data for different use cases. So how do we use that for better good?”

According to some executives, the pandemic illustrated how “important data sharing is” so that “we can get a real-time pulse on what’s happening, so that we can develop the diagnostics and therapeutics that we need, and ultimately, so that we can make the right decisions for our patients and for our populations,” Dr. David Stark, chief medical officer and head of HR data, analytics, and technology strategy at Morgan Stanley, said. But there’s now lots of “segmentation” of care, from hospitals, primary care, telemedicine, conditions, and by demographics, he noted. And while that enables “more attention to each individual’s care journey,” it “poses obvious issues” from the “fragmentation of the data that comes with it,” said Stark.

But Stark sees some opportunities moving forward: “Can we flip the paradigm of health care? For me, the atomic unit of health care is this patient initiated-encounter with a provider,” where a patient has a symptom or issue, goes to a provider who asks questions and examines the patient, and then “refines a hypothesis” about the patient’s issue through research and exam findings, which results in a plan of care. “Well, that can all be flipped on its head with data that’s longitudinal, that’s contextualized, and that’s shared across entities. Because with that, then you have a situation where, with technology, you can proactively [reach out] to a patient versus having to wait for the patient to initiate the encounter,” he suggested. “I see that as a fundamental change.”

For IBM Watson Health’s Wykoff, the solution could be using new technologies. Electronic medical records, or EMRs, “were billing systems, they were never designed to be an intelligent health record,” she argued. In the U.S., “we’re scrambling on how to deal with multiple on-premise systems and how we’re going to get them to talk to one another. The approach that we’re taking and trying to drive leadership around is, let’s put [it] into open source—Let’s use that open source community to get the data out there, allow us to exchange that data, use new technologies like blockchain” to enable citizens, employees, and patients “to share and own what data you’re providing.”

More underserved countries from a health care perspective are facing unique challenges, like Bangladesh, where Praava Health, a health care startup spearheaded by founder and CEO Sylvana Sinha, operates. Without data limitations like HIPAA, but with only a small percentage of the population with health insurance, “We have an opportunity to now structure that data in a way that we can use it, but it’s a massive opportunity and challenge,” Sinha suggested. “We have the opportunity to build systems that don’t exist for billing purposes,” that exist for doctors and nurses to do their jobs “better” and “for patients to better manage their own health. So I think this whole concept of human centered design around these systems has got to be taken into account in a more meaningful way,” she said.

Others like Dr. Cecil Lynch, chief medical information officer at Accenture, note the government needs to play a role. “When you look at the Nordic countries, they pay for all the health care for their citizens and they collect all of the data,” he noted. Yet there are “still challenges” because the data is often “collected in registries around a particular disease or particular purpose, and you still have aggregation to do there.” But he points to the CDC’s platform to aggregate COVID data “across the U.S., and that has been fairly successful. It’s limited by our underfunding of local public health, where the data starts, and the effort to kind of take that data and merge it into something that’s analytical. But the government has to take a role.”

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