Monday, October 24, 2005

Patient Privacy and Confidentiality

According to Healthcare IT News, at the recent American Health Information Management Association’s 77th Convention and Exhibition held in San Diego, there was a robust debate on the need for privacy vs. the need for confidentiality in electronic health records.

Emily Stewart, a policy analyst for the Health Privacy Project argued for strict privacy protections. “So protections have to be built in… It’s not going to work if patients feel that their privacy is not protected." “We believe patients need to be able to opt out of a NHIN,” she is quoted as saying, citing recent surveys.

aid. Stewart said surveys and focus groups show that Americans remain leery of making their records electronic. Only one in three adults say they trust health plans and government payers to protect their information. Another 20 percent say their personal health information has been illegally disclosed. Almost half of Americans felt that privacy concerns outweighed the health benefits promised by a NHIN. Stewart’s view was echoed by Connecting for Health’s Carol Diamond.

But others said confidentiality was more important. The difference is between securing data and a promise to share information only people who are supposed to have it.

“It’s not privacy they want,” he said, “but confidentiality," said Scott Wallace, CEO of the National Alliance for Health Information Technology.

It seems to me that both arguments are valid. Patients, even more than other consumers, expect that there is some minimal level of privacy and security protections associated with their data, whether that is in fact true. Patients also understand some sharing of their information will take place, but are also concerned about sharing that may take place without their permission or implied consent. For example, with their employer, or even a relative such as a former spouse, parents, or children. These lines are the hardest to draw, but perhaps the most important, from a patient's perspective.

Privacy safeguards can be implemented. When it comes to confidentiality, we need to ask: "What does each patient want? What does each patient expect? What is implied, and what is stated? Finally, how can patient desires be communicated clearly and followed properly?

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