Privacy of dead perplexes living

Archives: New rules meant to guard health records could block some historical research.

November 13, 2003|By Julie Bell | Julie Bell,SUN STAFF

The letters and photographs from grateful patients to the late Dr. Helen Taussig are filed safely away at the Johns Hopkins University. They are bits of history, carefully preserved to add patients' voices to the story of a doctor who saved infants with the pioneering "blue-baby" surgery, then kept in touch long after the babies grew up.

But a new federal patient privacy rule might keep many of the documents - as well as other, similar ones - from ever being seen outside the walls of some medical archives.

The rule, which went into effect this year after Congress established it as part of the Health Insurance Portability and Accountability Act of 1996, was designed to keep patient records from falling into the wrong hands, including those of employers who might use them to discriminate.

But researchers and historians are discovering that the rule applies not only to the medical records of the living, but to memos, notes and photos that concern the long dead.

As a result, some worry that the privacy rule might restrict the telling of history.

At Virginia Commonwealth University, for example, archivist Jodi Koste ponders whether she should remove the names, regiments and diagnoses of Civil War hospital patients from a university Web site.

In New Jersey, curator Karen Reeds said an idea for an exhibit on veterans' vaccination programs in a small Veterans Affairs hospital museum slogged to a halt.

At the University of California, Los Angeles, archivists at the biomedical library closed certain mortician files and World War II battlefield clinic records while lawyers reviewed what researchers could see.

And when the National Library of Medicine recently asked to use some previously unpublished letters and photos from Taussig's patients in its exhibit on women physicians, Johns Hopkins archivist Nancy McCall felt forced to decline unless the library got permission from the patients or their legal representatives.

Request for clarity

Two national associations - the Society of American Archivists and the Archivists and Librarians in the History of the Health Sciences - are so concerned that they wrote a joint letter last month to Health and Human Services Secretary Tommy G. Thompson asking him for clarification.

"Because of the general uncertainty about the meaning of the privacy rule provisions, many of our most important sources in the history of medicine and the allied sciences may be closed for research use," the letter said.

Whether that's true is subject to debate - institutions don't agree on how to apply the rule. But what is clear is that it covers far more than medical charts, to which archivists long have given special privacy protections.

It extends to health information that identifies an individual in the correspondence and papers donated to archives covered by HIPAA, a federal privacy official confirmed. It even covers photographs and, arguably, paintings.

Most patients are familiar with HIPAA because of the authorization forms they now sign in hospitals or doctors' offices. But the privacy rule's effects are so pervasive that the specially trained staff at Hopkins' Alan Mason Chesney Medical Archives now starts each day with a meeting devoted to it.

Among other things, they decide which research requests to send to a privacy board; which requests can proceed without going to the board because the researcher has patients' permission; and which records they must redact before providing them.

"If a founding father had a bad case of influenza, can that be discussed?" McCall asked. "This is where it gets ridiculous."

If a researcher wanted to write about the already well-documented cocaine addiction of Hopkins' first physician-in-chief, William S. Halsted, by quoting from previously unpublished archives sources, that probably would require a court ruling, McCall said. The reason: Halsted has no direct heirs from whom to seek permission.

Archives are historical treasure troves, containing original source documents on which histories are based. The medical archives at Hopkins contain more than 10,300 biographical files and about 80,000 photographs, as well as architectural drawings, videos, films and institutional records.

There are also more than 200 personal collections, such as those of cardiac surgery pioneers Dr. Alfred Blalock, surgical assistant Vivien T. Thomas and Taussig, who co-developed an operation to correct the congenital heart defect that causes "blue-baby" syndrome. The operation corrected an oxygen deficit that shortened lives.

`Wonderful collection'

Taussig's "collection is particularly difficult for us to deal with because she had voluminous correspondence with her patients," McCall said. "There are photos of their first communions and bat mitzvahs and photos of their progeny, and it's a wonderful collection in describing the doctor-patient relationship."

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