Spork is very relieved to finally see the privacy issue addressed in the discussion of computerizing medical records. Although Spork has frequently suffered from the inability of her various doctors and hospitals to communicate amongst themselves, Spork is more concerned about preventing people from accessing her medical records without her permission than about improving efficiency by making access easier. She believes that patients should own and control their own medical records, even though the file cabinets or computer servers where records are kept are in hospitals and doctors’ offices. This is a separate issue from whether or not records should be digitized, but it will inevitably come up whenever plans are made to digitize records.
Current laws restrict patients’ access to their own records. For example, in New York State, patients have the right to ask a healthcare provider to show them and interpret their records, but they do not have an absolute right to inspect the actual records privately and retain copies. Copies of records may be obtained by filling out a complicated form, but providers may delay responding, omit certain items, and charge per page if the patient is not indigent. They can even refuse altogether to provide records if they claim that it is not in the patient’s best interest to see their own raw records, in which case the issue is referred to a Health Department Committee on Access to Patient Records. The result of these rules is that patients usually can get their records easily when there is no disputed issue, but that there are numerous loopholes and delay tactics that providers use whenever there is a problem. And of course the problem situations are precisely those in which it is most essential to get copies of one’s medical records…
The privacy laws do a reasonable job of protecting patients from unauthorized access to their medical records for commercial use or by third parties, but often patients need to prevent doctors and hospitals from seeing certain records, and there is no provision for this in existing policy. For example, it is currently impossible to change a medical record, one can only add to it. In practice that means that a mistake persists forever. Patients misdiagnosed with a stigmatized disease can literally never escape the misdiagnosis. This has happened to Spork.
More commonly, a patient may genuinely have had a stigmatized disease such as a mental illness, substance abuse problem, obesity, or venereal disease, but having recovered from it, they may not want every doctor they see for the rest of their life to know about it. In an ideal world, more information is always better than less and a doctor could get useful information from knowing, for example, that an 80-year-old woman with a broken hip had a drug problem as a teenager (perhaps the doctor would monitor use of painkillers more carefully). But we do not live in the best of all possible worlds and almost every doctor has biases which in some cases are so extreme that they put their patient’s life in danger. In these cases, it is much safer for patients to be able to suppress information they do not want a new doctor to know.
This may sound outlandish to those who have not experienced discrimination in a health care setting. One example should be enough to illustrate the problem: A friend of Spork’s, a well-spoken former bank vice president in her 50’s, called 911 when she experienced severe abdominal pain. Her boyfriend, against her wishes, told the paramedics that she was taking antipsychotic medication. As a result, she was taken to the psychiatric ER and left moaning on a stretcher for many hours without a physical exam, and then, when she was finally given any attention, it was to have a social worker ask her why she was “agitated.” She had appendicitis, and by the time she was finally operated, her appendix was on the point of bursting and she had a longer hospital stay and more difficult recovery than is usual with appendicitis. She would have received immediate evaluation and rapid treatment had her wishes to supress psychiatric information been respected.
