Why have health information exchanges turned into such a debacle in the U.S.? At first blush, it's easy to jump to the conclusion that HIEs--organizations that let healthcare providers easily share information--are just a large sandbox with a lot of big egos not willing to play well together.
One player in the sandbox, of course, is the Centers for Medicare and Medicaid Services, which mandates that hospitals and medical practices participate in an HIE in order to obtain Meaningful Use incentive checks. Ignore the mandate and you'll eventually be penalized.
One of CMS' rules requires providers to "exchange clinical information electronically with other providers and patient authorized entities." In MU Stage one, that simply means clinicians have to show they're capable of sending this kind of information to someone outside their organization and testing that capacity. In Stages 2 and 3, they'll actually have to share that data.
Other players in the sandbox are the providers. Large hospitals and group practices sometimes object to sharing confidential data on patients because that will expose the demographics and disease characteristics of their respective patient populations, thus threatening their market share by making it easier for competitors to go after their patient population.
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But a closer look at all the issues suggests HIE problems go much deeper. At its core, the model suffers not just from an unwillingness to cooperate on the part of major stakeholders, but also from a lack of technical standards, poor financial planning, and a crisis of confidence among patients.
Healthcare providers have no universally agreed-upon way to share patient data. A case in point is the way patient summaries are exchanged. Some providers prefer a Continuity of Care Document (CCD) while others use a Continuity of Care Record (CCR). CCD uses the XML markup standard and HL7 for encoding a patient summary. CCR, a related health record standard specification that's also XML-based, can likewise be used to exchange patient summaries but converting CCDs into CCRs can be problematic. Both are viable standards, but you probably don't want to use them both in the same HIE.
On a more positive note, seven states and 11 health IT vendors recently banded together to support a set of technical specifications to standardize health data sharing among healthcare providers and health information exchanges. The specs are the result of a workgroup originally launched by the New York eHealth Collaborative (NYeC). They facilitate two basic health-data-exchange capabilities: patient record look-up and point-to-point, or direct, data sharing.
The states and vendors supporting this initiative represent about a third of the U.S. population, so it should go a long way toward bringing some order to the situation.
As far as solving the financial issues that plague many HIEs, sustainable business models typically have providers pay subscription fees, rather than transactional fees, to help cover operational costs. Many HIEs also look to insurers for help in covering costs, especially since the payers are the stakeholders that will probably benefit most from avoiding the costs of unnecessary tests and medical errors that can be prevented when providers have access to more timely, complete patient data at the point of care.
Several insurers now realize the wisdom of such an investment. Capital District Physicians Health Plan, for instance, recently announced that it will offer $1 million to help 800 specialists within its network implement health IT. The money builds on more than $10 million that the company already has invested to help its providers digitize their medical records and support interoperability of clinical data. Officials at the Albany, N.Y., health plan said the latest awards will pay for consultation services to help specialists select electronic health records, attest to Meaningful Use, and connect to the Health Information Exchange of New York.
Similarly, Blue Shield of California recently announced awards totaling nearly $20 million to help 18 California hospitals, health systems, clinics, and physician groups adopt EHRs, establish HIE interoperability, and support clinical system integration among physicians.
Perhaps the most thorny problem to solve in trying to get an HIE up and running is the public's fear that their medical data won't be safe. Given the number of well-publicized data breaches in the news recently, you can certainly understand their concern. One way to approach this issue is a well-thought out public relations campaign. The Office of the National Coordinator for Health IT has spent a good deal on money convincing health professionals of the value of EHRs and health IT, with full-page ads in JAMA and the New England Journal of Medicine promoting them. Why not create a similar campaign to convince the public of health information exchanges' value--and their relative safety.
If the U.S. healthcare system's movers and shakers really want to put patients' welfare first, they'll find a way to build bigger and better HIEs, with the ultimate goal of creating a universally accepted national exchange. After all, if a patient lives in Miami but finds herself in a hospital while on vacation in California, her ER doctor should have full instant access to her records. How much longer does she have to wait?
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