from Carl Segal, M.D.
[February 1996; Vol. 23 No. 1]
The Maryland Legislature, attempting to understand and control health costs, authorized the Maryland Health Care Access and Cost Commission (HCACC) to gather information about medical visits by patients in Maryland. The HCACC plans to gather data from a 100% sample of the population, except for HMO members. Patients’ coded “identifiers” will be entered into a computer system. Patients may change insurance companies or physicians, but their personal health care use will be tracked indefinitely. Most Marylanders are not aware of this additional assault on the confidentiality of their medical records and personal privacy.
Most patients, including those seeking psychiatric care, desire privacy. Most do not want information about their medical histories entered into any computer data banks. Some are so concerned about privacy that they themselves pay for care rather than use medical insurance. Many would not seek help if they thought that treatment information would be entered into a State’s computer.
Many physicians believe that the additional breach of patients’ privacy will not provide enough useful data to warrant further erosion of confidentiality. Computers and software do have the capacity to store huge amounts of data, but we question the economics of processing and analyzing a 100% sample when a smaller, less intrusive, statistically-valid sample, would provide the same basic information. Use of individual identifiers is especially distressing since aggregate, rather than individual, data will be submitted by HMO groups.
Many of us believe that this additional intrusion into patients’ privacy may have untoward effects on care. The Maryland Psychiatric Society spoke against gathering data in this manner, especially from private, self-pay patients who request not to be included. These opinions and recommendations went unheeded. An HCACC Workgroup voted that patients should have NO OPTION to be excluded from data collection, even those who self-pay and are confidentiality-sensitive.
This is the essence of unnecessary, intrusive, “1984 style, Big Brother knows best” behavior on the part of the State. The State says no one will be harmed from the data collection, and useful information will be gained for the public benefit from its analysis. That may be true. But it does not address a citizen's right to visit a physician, secure in the knowledge that, IF SHE OR HE CHOOSES, it will be held confidential between patient and physician. There are NO absolute guarantees of confidentiality once data are entered into computer files of either insurance companies or the State, and no one knows how this information may be used in the future.
It may be futile to lock a bit of the barn door of medical confidentiality after almost all of the contents have been lost to insurance companies and managed care organizations. However, there still are a few shreds of confidentiality left. Now even these are threatened by the HCACC. There are no compelling reasons to erode medical confidentiality even more. There is no need to gather data from every patient visiting a private physician to permit government to plan policies or develop legislation about health care services. Smaller samples will do. Availability of computer systems able to gather and process such data does not mean that we ought to compel every citizen to reveal their health care visits to such Orwellian devices.
I hope that your readers will write about this matter to the Sun, The Medical Society of Maryland (Medical and Chirurgical Faculty) and to their Delegates and State Senators protesting this new intrusion into their privacy. We have faced major erosions in patients’ confidentiality over the past several years. This must stop now, or soon there will be few medical privacy rights left to protect.