Friday’s “New Old Age” column in the The New York Times suggests tha HIPPA privacy rules are applied inconsistently.
“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.
Within families, decisions about how much health information to share, and with whom, often become complicated, as a recent study in JAMA Internal Medicine found. When researchers working to design online patient portals convened two sets of focus groups — one for people over age 75, another for family caregivers — they heard the usual tension between older adults’ need for assistance and their desire for autonomy.
“Seniors say, ‘I don’t want to burden my kids with my medical issues,’ ” said Bradley Crotty, the director of patient portals at Beth Israel Deaconess Medical Center in Boston and the study’s lead author. “And the family is saying, ‘I’m already worried. Not knowing is the burden.’ ”
The older group wanted help but not second-guessing or “spying,” Dr. Crotty added. They might agree to disclose the medications they take — just not all of them.
Moreover, the dynamic often changes with increasing disability or a health crisis.
“Say a senior has a serious medical condition — a stroke, for instance — and requires a lot of help and support,” Dr. Crotty said. “He could recover enough to want to take back control of his health information. It may go back and forth.”
Also note that the new Health Wonk Review is up at the Insure Blog.