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NEJM:

Tectonic Shifts in the Health Information Economy

Kenneth D. Mandl, M.D., M.P.H., and Isaac S. Kohane, M.D., Ph.D.

In a recent shift in the health information landscape, large corporations are seeking an integral and transformative role in the management of health care information. The mechanism by which this transformation is likely to take place is through the creation of computer platforms that will enable patients to manage health data in personally controlled health records (PCHRs). Two types of large corporations are involved. Technology companies such as Google and Microsoft see business opportunities,1 whereas Fortune 100 companies in their role as employers2,3 see efficiencies and cost savings when patients can securely store, access, augment, and share their own copy . . .

From the New York Times story about the NEJM article:

... Today, most patient records remain within the health system — in doctors’ offices, hospitals, clinics, health maintenance organizations and pharmacy networks. Federal regulations govern how personal information can be shared among health institutions and insurers, and the rules restrict how such information can be mined for medical research. One requirement is that researchers have no access to individual patients’ identities, although there can sometimes be exceptions to those restrictions, if they are approved by an independent ethical review panel.

Under the current system, individuals can request their own health records, but it is often a cumbersome process because information is scattered across several institutions.

As part of a push toward greater individual control of health information, Microsoft and Google have recently begun offering Web-based personal health records. The journal article’s authors describe a new “personalized, health information economy” in which consumers tell physicians, hospitals and other providers what information to send into their personal records, stored by Microsoft or Google. It is the individual who decides with whom to share that information and under what terms.

But Microsoft and Google, the authors note, are not bound by the privacy restrictions of the Health Insurance Portability and Accountability Act, or Hipaa, the main law that regulates personal data handling and patient privacy. Hipaa, enacted in 1996, did not anticipate Web-based health records systems like the ones Microsoft and Google now offer.

The authors say that consumer control of personal data under the new, unregulated Web systems could open the door to all kinds of marketing and false advertising from parties eager for valuable patient information. ...

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Comments (2)

I don't think there's any way to regulate privately-held records. One more argument for single-payer healthcare..

See the link from my name for further ranting on the subject..

Jardinero1 on April 25, 2008 9:47 AM:

Before asking how it is often wiser to ask why. A better question is: why should we regulate peoples records?

The vast majority of patients are healthy and their charts and medical history contain little or no data that would influence a medical decision or outcome. Anything that is really pertinent about me if I were to visit a doctor or an ER could be discerned upon examination without consulting my chart. This is true for probably ninety eight percent of the cases and outcomes in a clinicians office, ER or hospital. For the remaining two percent of the population whose medical history contain information critical to their continued health, there is no reason why they could not contract individually to have their information stored in a private database if they so choose.

Why must there be a global, coercive, government solution?

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