In the United States, only 23 out of 50 states have laws granting patients the right to see their own medical records, according to the Compilation of State and Federal Privacy Laws, recently published by Privacy Journal.
Often, countries outside the United States don't guarantee citizens access to personal medical information, either.
Germany, for example, is creating a national database on people diagnosed with cancer. But medical professionals in that country have a tradition of withholding a diagnosis of cancer out of a concern to protect patients from stress. Therefore, the information about patients in databases is not available to the ill patients themselves, according to "Database Nation," a book by Simson Garfinkel.
A great deal of information is available on the Internet that consumers should take advantage of but seldom do. For example, the Medical Information Bureau posts different online forms that citizens of various countries can use to request their "MIB record."
This record, available for $8.50, lists the medical conditions you have of the some 230 that the bureau tracks for insurance companies. The fee is waived if you were denied life, health or disability insurance in the past 60 days because of information provided by MIB.
Because information in computer databases is often wrong or incomplete, even consumers who don't face serious medical problems should examine and correct any errors in MIB records.
Even if you live in a place where laws ensure access to your personal medical records, you may find that things get slippery when you actually try to obtain them.
The Privacy Rights Clearinghouse, a consumer protection organization in San Diego, has been trying since January to help a dental patient get medical records she needs.
The patient, Jean Holloway, says she paid for $6,933 worth of crown and bridge work on her teeth in 1997 and 1998. She later reversed the charges she'd authorized on her credit cards, claiming that the work she'd paid for in advance was incomplete and left her in pain.
California is one of the 23 states that grant patients the right to their own medical records. But Holloway says the original dentist wouldn't release X-rays and dental molds that a new dentist would need to reconstruct her teeth.
Seven other dentists declined to perform the reconstruction, citing the lack of documentation of the original condition, Holloway says. She finally found a dentist who agreed to help her, but the experience was exhausting.
A spokeswoman for the original dentist declined to comment and referred questions to a lawyer, who didn't return two calls.
The hot-line director of the Privacy Rights Clearinghouse, Jodi Beebe, suggests that consumers do the following to ensure their access to medical records:
Get copies before they're needed. Waiting until you're in a dispute with a health-care professional can complicate matters. Before you actually need your files, you may be able to obtain copies by making a simple request of office personnel, even in states or countries where no right-of-access exists.
Know the law. An excellent summary of the medical privacy laws of each of the 50 states is maintained by the Health Privacy Project. This organization, based at Georgetown University in Washington, D.C., posts descriptions that can be printed for each state. Taking a copy of your state's summary to a health care professional, Beebe says, can help you get more cooperation when requesting records.
Ideally, accessing your medical records should be simple for you but difficult for others. As that's not the case, you should at least check the records you know exist.
Do you know of a problem affecting consumers? Send information to tips@BrianLivingston.com. He'll send you a book of high-tech secrets free if you're the first to submit a tip he prints.