Privacy shield crucial for online health records


Published on: 03/07/08

The Atlanta Journal-Constitution editorial board was right when it said electronic medical records will save lives ("Medical records in the new era," @issue March 3). But the board fails to realize that their use can ruin lives, too, unless both sensible privacy and security precautions are instilled upfront to protect patient privacy.

There is no magic "delete" button with electronic medical records. Safeguards have to be built in from the very beginning. Georgians have every right to demand of Gov. Sonny Perdue that those precautions be a prerequisite for participating in the Health and Human Services demonstration project for electronic medical records.

The problem regarding health privacy in the digital era is partly due to the Health Insurance Portability and Accountability Act.

Most Americans think HIPAA protects their health data. Wrong. Those Americans should read the fine print issued earlier in this decade by rule makers who, reversing the intent of Congress, eliminated the right of patient consent over how their data is used for treatment, payment or health care operations. What the rule makers did is negate the Hippocratic Oath, with its emphasis on doctor-patient confidentiality, which has guided medicine for centuries.

That stroke of the rule makers' pen allows data-mining firms to take your personal health information to use for their purposes without your consent. It's all there for data-mining firms to use — your prescriptions, your treatment for mental health, your genetic predisposition to certain illnesses. You have no say over how and when and by whom your data is used.

Now America is on the threshold of entering the digital era of health record keeping. Google and Microsoft have just introduced health record keeping software. Congress is considering standards to make health record systems interoperable, allowing easy access to records using different software and from different health care providers.

While Congress takes its time trying to determine standards, HHS pushes ahead with its experiment with medical records systems. Perdue and state legislators and health officials should ask these questions:

• Is the HHS site plan premised on the right of consent? In other words, in nonemergency situations does the patient have the right to determine who sees her information and under what circumstances?

Consent given for one reason is not readily transferable. It applies simply for that reason.

In other words, if a patient agrees to have her doctor share her record with a specialist, that record should not also be part of research or marketing efforts without separate, informed consent.

• Does the HHS plan allow patients to segment sensitive parts of their record, not permitting widespread access? In other words, a nurse delivering a flu shot will not be entertained by the details of one's suicide attempt when one was a teenager three decades ago.

• Does the HHS plan provide for an audit trail to determine who has accessed your health records and under what circumstances? Georgians would likely be astounded to see how many eyes are on our private health information.

The foremost beneficiaries of widespread availability of health data will not be patients.

It will be employers who will use that data in helping to determine hiring. It may be credit firms.

It will be the data-mining firms that will use that data to push their wares on consumers.

Georgians need to know that there are no effective standards to protect privacy using health information technology right now.

The U.S. Senate nearly passed a bill, the Wired for Health Care Quality Act, only to have it held up because the American Medical Association and privacy advocates, including Patient Privacy Rights, were concerned it lacked effective privacy protections.

Now Rep. Ed Markey (D-Mass.) has introduced the Trust Act, which contains effective privacy protections and which is supported by groups ranging from Gun Owners of America to the National Association of Social Workers.

Georgians need to pressure the state Legislature to explore not just the benefits of electronic medical records, but also the potential pitfalls.

Preventive medicine is not just for aches and pains, it's sound practice in this new digital era.


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