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March 2006
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Your medical data, in bits & bytes
The federal government is working right now to convert bulging drawers of paper medical records into computer files, then linking those files to a central system (see our March 2006 report on Electronic medical records). Once this information network is established, your blood pressure and cholesterol levels, your bone and brain scans, will be accessible electronically, just as your banking and other financial records are now. That's precisely why consumer groups and patients must have a say in the development of the network and the standards that govern it. If we don't, we'll be scrambling to stop the same abuses and fix the same problems that we face in protecting our financial information. There's widespread agreement on the need to accelerate the use of information technology in our otherwise high-tech health-care system. Most hospitals and doctors' offices still store patient records on paper, making the history of our medical care hard to transfer from one hospital or doctor to another. The inefficiencies of this system lead to medical errors and the loss or misplacement of vital information. As for the patients, we rarely see our own fragmented records or track our own health histories. The federal Department of Health and Human Services has launched a program to speed up the adoption of electronic health records and to form a network linking them nationwide. The Senate passed legislation in November that includes a call for “uniform and consistent implementation of any standards for the electronic exchange of health information”; the House is expected to consider bills this year. Some hospitals and doctors' offices already use electronic records and stored MRIs, X-rays, and CAT scans. The problem is that current and pending legislation doesn't provide adequate protection of your privacy as a patient. The potential for unintended leaks and outright abuse is high. None of us should tolerate a system that fails to protect our privacy. Last year, Consumers Union, the nonprofit publisher of this magazine, and eight other patient and consumer organizations drafted principles that we believe should guide the development of any electronic health-information network (go to www.ConsumersUnion.org for the full list and what you can do). Among them: • It must be able to transfer health records reliably and securely. • The governance and administration of a national health-information network must be public, transparent, and accountable. • We should be able to review and control who has access to our personal health information and to supplement, annotate, or correct our records. • We should be told in simple, easily understood language how our health information might be used, and be able to choose whether we want to make it available for those purposes. The time to get this right is right now.
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