A quiet revolution has swept through our health care system, almost eliminating a paper-based record system in favor of a digital one. Today, almost 100 percent of hospitals and 80 percent of physicians use certified electronic health records (EHRs). Health Information Exchange (HIE), the technical term for moving health data around our health care system, enables medical providers to share patient information electronically, improving the speed, quality, safety, and cost of care. America’s digital health revolution has trailed the adoption of EHRs in many other developed countries, but is leaping ahead.
Even though EHRs are now widely used in the U.S., patients’ health data is not being electronically shared as freely or frequently as many had hoped. The obstacles to data-sharing are often described as technical, including a lack of tools for interoperability. But these criticisms miss the main problem: the economics and culture surrounding access to and sharing of health information.
Uniquely in the developed world, the U.S. organizes health care as a competitive marketplace, promoting— indeed insisting on—competition among a vast web of health systems, hospitals, nursing homes, and doctors. To providers, patient records are a valuable economic resource. If the records can move, so can the patient, and the business the patient creates for the provider. An analogy regarding private retail companies is useful here— Amazon would be unwilling to share its consumer data with Walmart, which it perceives as a direct competitor to its business.
"If patients are able to exercise control over their records, the flow of health information may become much faster and less cumbersome"
An additional issue is cultural: providers create patient records, and so often believe that patient records are their property—not the property of the patients. In their view, they are the ones to decide whether and with whom to share it.
What can be done to improve the flow of critical health information? Government has taken a variety of steps, including enacting financial penalties for health care organizations that engage in so-called “information blocking” by standing in the way of the movement of health care data that is authorized by patients. Another approach, though, is to give patients direct control over their own records.
The privacy rule of the Health Insurance Portability and Accountability Act (HIPAA) already requires health providers to give patients access to their protected health information within 30 days of receiving the patient’s request. Efforts are underway to educate patients and providers about HIPAA’s privacy provisions, but the federal government could do more to reinforce this rule. If patients are able to exercise control over their records, the flow of health information may become much faster and less cumbersome.
Many patients will need support to manage their records. This could be a major business opportunity for tech companies, who could serve as health data stewards. This sort of “consumer-mediated health information exchange” would shift the power over information from the provider to the end user—the patient. Health data stewards would likely need to be certified before they can be trusted with something as complex and sensitive as patient health data. Trust will be a central element in any scheme to make health data flow as easily as water through the electronic pipes of our health care system
HIE has modernized and streamlined U.S. health care delivery, but its full potential is still to be tapped. A transformation in our culture around health-information sharing is required for patients to truly benefit from health care’s digital revolution.