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Are Patient Privacy Laws Being Abused to Protect Medical Centers?

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This story was co-published with NPR’s “Shots” blog.

In the name of patient privacy, a security guard at a hospital in Springfield, Missouri, threatened a mother with jail for trying to take a photograph of her own son. In the name of patient privacy , a Daytona Beach, Florida, nursing home said it couldn’t cooperate with police investigating allegations of a possible rape against one of its residents.

In the name of patient privacy, the U.S. Department of Veterans Affairs allegedly threatened or retaliated against employees who were trying to blow the whistle on agency wrongdoing.When the federal Health Insurance Portability and Accountability Act passed in 1996, its laudable provisions included preventing patients’ medical information from being shared without their consent and other important privacy assurances.But as the litany of recent examples show, HIPAA, as the law is commonly known, is open to misinterpretation – and sometimes provides cover for health institutions that are protecting their own interests, not patients’.

“Sometimes it’s really hard to tell whether people are just genuinely confused or misinformed, or whether they’re intentionally obfuscating,” said Deven McGraw, partner in the healthcare practice of Manatt, Phelps & Phillips and former director of the Health Privacy Project at the Center for Democracy & Technology.For example, McGraw said, a frequent health privacy complaint to the U.S. Department of Health and Human Services Office of Civil Rights is that health providers have denied patients access to their medical records, citing HIPAA. In fact, this is one of the law’s signature guarantees.”Often they’re told [by hospitals that] HIPAA doesn’t allow you to have your records, when the exact opposite is true,” McGraw said.

I’ve seen firsthand how HIPAA can be incorrectly invoked.

In 2005, when I was a reporter at the Los Angeles Times, I was asked to help cover a train derailment in Glendale, California, by trying to talk to injured patients at local hospitals. Some hospitals refused to help arrange any interviews, citing federal patient privacy laws. Other hospitals were far more accommodating, offering to contact patients and ask if they were willing to talk to a reporter. Some did. It seemed to me that the hospitals that cited HIPAA simply didn’t want to ask patients for permission.

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Refocusing Long-Term Care on People: The Three I’s  

Both participants and caregivers in long-term care programs face a myriad of difficulties. Participants with long-term services and supports needs often have many health issues, meaning they are in constant transition between care environments and providers with their needs ever-evolving. As a result of visits to a number of doctors on a regular basis and the number of providers who support them, the participant’s information lives in multiple locations. This can lead to discrepancies between providers and the participant having to constantly provide the same information.

Caregivers, especially family members, are also facing great challenges. It’s a full-time job to care for someone in the home – it takes nearly 40 hours a week – and searching for a trusted service provider to take over can be another job in and of itself.

The root of the problem is that many long-term care programs are focused on the providers and not necessarily the people – those receiving the services and those providing them. Often, no one has the full picture of the participant’s health, which can lead to suboptimal care. An ideal situation is for everyone involved with the participant to be up-to-date and have a full-picture of their health and well-being at all times. When they are, services can be administered effectively with less risk for everyone involved.

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