Health records shared online pose dilemma

Keith Darcé writes in the Union-Tribune:

After being diagnosed with Lyme disease, former senior executive Keith Schorsch wanted to find others dealing with the illness, and he thought the Internet could help him make those connections.

The experience led to the recent launch of Trusera, a Web site that lets people record and share their health stories.  Schorsch is part of a new wave of Internet entrepreneurs who are applying some of the Web’s best-known tools – social networks, blogs and search engines – to the potentially lucrative task of helping consumers make better decisions about their health care.

He was among 350 of the sector’s most important players, including Google and Microsoft representatives, who gathered yesterday at the Westin San Diego for Health 2.0, a conference designed to showcase the latest interactive health care offerings on the Web.

But the growing buzz is being tempered by worries that personal medical information posted on Web sites could be compromised.

Just two weeks ago, the San Diego-based World Privacy Forum cautioned consumers against rushing to create an online personal health record, a centralized repository for private information usually confined to files stored in doctors’ offices and hospitals.

“Any consumer worried about the privacy of personal health information should proceed with great caution before agreeing to sign up for a (personal health record),” the nonprofit organization warned.

The problem is that most health care Web sites aren’t covered by the Health Insurance Portability and Accountability Act, the federal law that requires health care providers to protect the privacy of personal medical records, said Pam Dixon, the forum’s executive director.

“This is a brave new world,” she said. “I’m deeply concerned that consumers aren’t going to understand the harm before their information is out there” on the Internet.

One concern is that insurance companies might use personal information posted on Web sites as justification to turn down a person’s application for coverage, Dixon said.

The issue surfaced in December when a New Jersey judge ordered a girl to turn over her postings on the Facebook and MySpace social network sites as evidence in a lawsuit seeking to force Horizon Blue Cross Blue Shield of New Jersey to pay for the girl’s medical treatment for an eating disorder, according to Horizon said the condition was psychological rather than medical, and that the girl’s postings proved it.

Despite all of the good intentions expressed by the companies running health care sites, privacy policies can be changed at any time, Web sites can be sold to new owners and courts could issue subpoenas forcing site operators to turn over information that was intended to remain confidential.

Joyce Sheean, a retired university dean’s assistant from Spring Valley, said she never considered whether she was compromising her privacy when she created a profile in November on a social network site for osteoporosis sufferers after she was diagnosed with the illness.

“I don’t have a clue if (HIPAA) applies to (the site),” she said this week. “I didn’t even think about it.”

Read More – Union-Tribune

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