Your medical records - housed in your doctor's office and in any hospitals where you've been a patient - are confidential. However, medical information given when you apply for health, life, or disability insurance is often stored in a central data base called the Medical Information Bureau and is shared among health insurance companies. This material may also be disclosed (with your permission, though sometimes without) to government agencies, schools, and employers. Yet, ironically, these same records may not be readily accessible, or not available at all, to you, the patient. You should have a complete, up-to-date set of your records. That way, if your doctor retires or dies and has not provided for the transfer of records, you'll be able to bring your records to a new doctor. Thus the continuity of your care will be ensured and costly tests will not have to be needlessly repeated. And by obtaining a copy of your records, you may also become a more informed medical consumer in general, gain more control of your health care, and perhaps establish a more open and equal relationship with your doctor.

In the past, many doctors and health-care providers argued against patients' right of access to medical records, since these files are often highly technical - and possibly confusing and alarming. However, in recent years, thanks in large part to lobbying by consumers' groups, about half of all states now guarantee access to medical (and often mental health) records. To obtain a copy of your records, simply contact your doctor's office or the hospital where tests or procedures were done. Even in states without full guaranteed access, most doctors and hospitals will honor requests for copies. There may be a charge for photocopying and mailing. A good way to keep records is to regularly request copies of test results and notes from your doctor after each visit.

Specific laws and procedures concerning medical records vary from state to state. Public Citizen's Health Research Group, the nonprofit consumer advocacy group, has published a 66-page booklet called Medical Records: Getting Yours, which includes a summary of your legal rights in each state, and what to do if a request is denied or if the records are incorrect. It is available for $10 from Public Citizen, 2000 P Street, NW, Suite 600, Washington, DC 20036.

The Medical Information Bureau, the central clearinghouse that insurance companies rely on to pool the data you supply whenever you apply for insurance, contains files on millions of Americans. Your records there can play a key role in whether you're able to get medical or life insurance and how much you have to pay for it, so it's important to make sure they are accurate. You can get a free copy of your file by calling 617-426-3660 or by writing to P.O. Box 105, Essex Station, Boston, MA 02112.

- University of California at Berkeley Wellness Letter, November 1993. .

As published in the VHL Family Forum, 3:2, June 1995. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org