June 28, 2016
The Biggest Obstacle to the Health-Care Revolution
By David Blumenthal
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.
Dr. David Blumenthal is the president of the Commonwealth Fund, a national health-care philanthropy based in New York. From 2009 to 2011, he served as the National Coordinator for Health Information Technology, with the charge to build an interoperable, private, and secure nationwide health information system and to support the widespread, meaningful use of health IT.
Comment by Don McCanne
We have some serious problems in health care that need our immediate attention such as administrative excesses, wasteful spending, impaired access, maldistribution of health care resources, and financial barriers to care. But the health policy community is entrenched in efforts to expand the administrative oversight of our system as somehow being the solution to problems they seem not to have defined. They are adding to the problem of administrative excesses while ignoring what really needs to be done.
David Blumenthal, having been our National Coordinator for Health Information Technology, seems to define the problem as a lack of health data management through a health information exchange. He would create a "robust new business sector" - a "consumer-mediated health information exchange" - providing data services to patients. Just what we need - more administrative excesses!
Right now our government and the health care industry are deeply involved in drafting rules for the Merit-based Incentive Performance System (MIPS) and the alternative payment model (APM) option as more studies are showing that such efforts are impairing professional satisfaction and increasing physician burnout - more administrative excesses with detrimental outcomes!
We need to start thinking about the patients and a health care system that would best serve their needs. A single payer national health program is specifically designed to address the real problems noted in the first paragraph above. Patients are not looking to interact with personal data managers; they want health care, and they want it now.