Deborah Peel sounded more than a little frustrated. She listed the accomplishments of her consumer advocacy organization" Patient Privacy Rights"in helping get consumer health IT protections into the stimulus bill, then vented her concerns about getting them to stick.
"We're in the middle of a horror show, watching how industry tries to weaken or even violate the various protections that have been a matter of law since Feb. 17 a year ago," said Peel, a physician who founded Patient Privacy Rights in 2004.
Patient Privacy Rights probably accomplished more than anyone expected. From almost total obscurity just a few years ago, the still-tiny coalition of state and national organizations"plus Microsoft Corp."made a name for itself in Washington, D.C. and state capitols, and its input is still sought after.
That's given it some heft among those in the Obama administration and Congress who wrote the privacy protections in the HITECH Act of 2009. It claims primary responsibility for the ban on the sale of protected health information without patient consent, for example, as well as for rules requiring healthcare facilities that use electronic health records to provide an audit trail of health record disclosures.
In some ways the advocacy was the easy part, Peel says. Patient Privacy Rights is now digging in for what she called the "hard slog" of getting these and other health IT privacy laws implemented and to persuade those government groups that write regulations backing these laws to pay attention.
"Our biggest disappointment was that the Health IT Policy Committee ignored our coalition's request for consumer protections to be a part of meaningful use, so nothing the consumer wants are required up front in EHRs," she said.
Given the energy already expended by Patient Privacy Rights, you might expect at least some kind of time out for a breather, particularly in the face of such grinding opposition. However, that doesn't seem likely. Peel herself is keeping up a frenetic pace, jetting to meetings and presentations with state legislatures and federal panels.
Patient Privacy Rights is also keeping up the pressure. Its latest campaign is called Do Not Disclose, patterned after the national Do Not Call list for unwanted phone solicitations, that aims to set up a similar list to stop companies and government from using health data without permission.
Peel said that what drives her and the members of her coalition is that the lack of health data privacy has a real effect on people.
"Our point is that the lack of privacy kills and causes suffering for millions of people," she said.
