Your secrets are well on their way to becoming common knowledge, readily summoned by a few computer keystrokes. An alarming array of companies is already busily culling information from consumers’ medical records. And a little-noticed section of the Health Care Portability and Accountability Act that passed last year could make it even easier for all kinds of strangers to find out if you’ve ever had an abortion or if depression is keeping you glued to your bed in the morning. ““What this means is that whatever medical information is collected on people can be used for or against them, depending upon who asks for it,’’ says Rep. Jim McDermott of Washington.
On the face of it, the new law is simply moving medicine into the computer age. It calls for standardization of all the bits and pieces of medical information compiled by doctors, hospitals, health plans and insurers about their patients. There’s no end to the benefits of uniformity, say backers. First, patient data will flow electronically among insurers and health-care providers, making it cheaper to track and pay claims. Electronic links among health-care groups will make it easier for an emergency-room doctor, for example, to quickly call up a patient’s medical history. Researchers and statisticians will have acres of compatible data to pore over. The network will even help the police finger suspects.
But all this good-for-you progress is marred by one big, ugly fact: every detail of your medical profile may well land in this new system without your consent. How could such a violation of doctor-patient confidentiality happen? Easy. ““There’s no law protecting consumers’ medical records,’’ says Lewis Maltby, a staff director at the ACLU.
Hospitals and doctors are already beginning to record their notes in electronic form. Once the new, linked system is in place, their disparate chronicles will form a national databank. Anyone who knows your special health-care number will be privy to some of your most closely guarded secrets. Already managed-care companies demand details from psychotherapists’ sessions. ““Almost no one understands the depth of information being collected,’’ says Denise Nagel, founder of the National Coalition for Patient Rights, in Lexington, Mass. The National Committee on Vital and Health Statistics has tentatively recommended that this mother lode of medical information be further augmented by specifics on living arrangements, schooling, gender and race.
As it stands now, insurers and others can’t lay their hands on your records unless you sign a release. In many states they need special permission to get sensitive information, such as your HIV sta- tus or mental-health record. But there’s no certainty that you’ll have similar control under the new system. Organizations clamoring for unfettered access to the databank include insurers, self-insured employers, health plans, drugstores, biotech companies and law-enforcement agencies.
What will safeguard our secrets in this Orwellian project? Good question. The law does require Congress to enact privacy legislation. But no one seems to have confidence that protective shields will work. ““If the CIA had its Web site invaded by vandals, how secure is this database going to be?’’ asks Donald Palmisano, the American Medical Association’s spokesman on privacy issues.
Take some steps to protect your privacy. First, know what’s actually in your medical record. Request a copy of your record from the doctors and hospitals that treat you, or go to the records department and take a look. Also, be sure to date any release of medical information that you sign. Add an expiration date if one isn’t specified on the form.
Guarding your future electronic record will be a bit harder. You can call the National Coalition for Patient Rights (888-44-PRIVACY) to register your name on a pro-privacy petition that suggests consumers control who sees their medical information. And it’s also smart to lobby your employer’s benefits department. Since corporate employers are the health-care world’s big spenders, their opinions really count. Now’s the time to voice your opinion loudly. Otherwise your health secrets could quickly become an open book.
