By David Blumenthal
The Wall Street Journal
Jun 28, 2016 6:15 am ET
Dr. David Blumenthal (@DavidBlumenthal) is the president of the Commonwealth Fund, a national health-care philanthropy based in New York.
The digitization of our health-care system is well under way, but several obstacles frustrate efforts to take full advantage of the health information revolution. Perhaps the most important is our difficulty moving patients’ data, so that records can follow patients as they go from one site of care to another.
Moving health data goes by the technical term “health information exchange” or HIE. There are some technical barriers to HIE, but they are not the big problems. The big problems are economic and cultural.
The American health system consists of competing economic entities: health systems, hospitals, nursing homes and doctors, to name a few. State and federal authorities zealously enforce antitrust laws to assure that local health-care competition remains strong. But health providers’ data about their patients is a valuable economic asset that some doctors and hospitals are understandably reluctant to share with their competitors down the street. Many patients stick with clinicians and hospitals in part because that’s where their records are. If the records can travel, so may patients, taking their business with them. Also, many providers believe that they – not patients — own that information, and have no obligation to share it.
A recent federal report cites this “information blocking” by providers as an important obstacle to HIE. Legislative and regulatory remedies to information blocking are under review, but there may be another, equally powerful route to HIE: giving patients their records so they can decide who can have them and when.The idea is simple. Under provisions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA), providers must share patients’ records within 30 days on request. Instead of doctors or hospitals totally controlling their health information, patients could take charge. Managing this information may be challenging for some patients, but they could retain third parties that, for a fee, would steward and distribute health-care data as directed. Patients could designate particular clinicians or institutions, or family members and caretakers, as entitled to access. If so inclined, patients could also share their health information with researchers or public health authorities. Some call this “consumer-mediated health information exchange.” A robust new business sector could provide these data services to interested patients.
To move forward with consumer-mediated HIE, several steps will be required. First, the federal government needs to more aggressively enforce HIPAA’s information-sharing provisions. Second, we need a new cohort of health-data stewards who can help patients manage their own data. Some process of private certification or public regulation will likely be necessary to assure that these new entities can be trusted to discharge this sensitive and complex responsibility. Third, we will need to perfect the technical ability of these new data stewards to access the electronic-data repositories of health-care providers.
All these steps are feasible. Several are already under way. If we can accomplish them, we may be able to realize the full potential of the digital health-care revolution. The benefits for individual patients and the larger society will be huge.
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