Athough the Health Insurance Portability and Accountability Act (HIPAA) was intended to protect the privacy of personal health information private, it’s often misinterpreted as prohibiting healthcare providers from sharing information with family, friends or caregivers.

Recent examples of health officials mistakenly refusing to divulge patient information described by The New York Times outlined misinterpretations of the law: A continuing care retirement community in Ithaca, N.Y, refused to divulge the whereabouts of a missing patient to a fellow community member; a woman talking about poor treatment of her husband café at a Boston hospital was told she was violating HIPAA; a woman phoning a York, Pa. hospital where her elderly father was being treated refused to take the information, citing HIPAA and after considerable effort was able to inform the hospital that her father was allergic to the medicine he was about to be given.

In each case, providers misinterpreted HIPAA.

“It’s become an all-purpose excuse for things people don’t want to talk about,” said Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, which has published a HIPPA guide for family caregivers, according to the Times.

Although intended to keep personal health information private, the law does not restrict health care providers from sharing information with family, friends or caregivers unless the patient specifically objects. “Even if she is not present or is incapacitated, providers may use “professional judgment” to disclose pertinent information to a relative or friend if it’s “in the best interests of the individual,”’ theTimes reported.

In response, U.S. Rep. Doris Matsui (D-CA), a member of the House Energy and Commerce Health Subcommittee, recently introduced legislation to clarify HIPAA privacy rules. The proposed bill would require the Department of Health and Human Services, to clarify permissible privacy rules and creates model training programs for educating health care providers and administrators, patients, and families on the health information that can be shared with family members and caregivers, and in which scenarios.

“Healthcare providers and administrators have long lacked clarity on HIPAA rules and thus have been cautious to share information with family members and caregivers of patients,” Matsui said in a news release. “This lack of clarity creates significant challenges to patients, their doctors and family. Sharing the right information with the right family and caregivers can help a patient, while still protecting their privacy.”

Linda Rosenberg, president and CEO of the National Council for Behavioral Health, endorsed the proposed legislation.

“For far too long,” Rosenberg said, “too many have misunderstood or hidden behind HIPAA.”

Driving part of the reluctance to give out patient information is concern by healthcare staffers of consequences if they violate HIPAA. Patients can complain to the Health and Human Services Office for Civil Rights, the Times reported. Providers under the law have flexibility in divulging information in the patient’s interest, but it doesn’t require them to.

“Do I see it going after a health care provider for disclosing something to a family member in good faith? I don’t,” Clinton Mikel, chairman of an American Bar Association group on e-health and privacy, told the Times. An assisted living staff member or hospital aide isn’t likely to lose her job.

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