I've thought for years that HIPAA made it clear that patients, and patients alone, own the information in their medical records, whether those records were paper or electronic. I've thought for months that the American Recovery and Reinvestment Act of 2009 reiterated this precept. Alas, the reality is not so simple.
I read with great interest a story in Federal Computer Week about how the debate over privacy and control of data is slowing adoption of electronic health records. The story is a report from a U.S. Chamber of Commerce forum on health IT this week. There, speakers explained the tricky politics of allowing patients to control every aspect of their medical records, such as whether to deny dermatologists access to information about treatment for substance abuse. It's fair to say that a good number of people would be reluctant to share with, say, a physical therapist, that they have a sexually transmitted disease, have sought psychiatric care or have had cosmetic surgery.
On the other hand, the story notes, doctors often aren't comfortable with being denied a full picture of a patient's health. After all, aren't EHRs supposed to remedy the rampant information fragmentation in healthcare?
"This is one of the thorniest issues in pursuing EHRs," Joel Slackman, managing director for policy at the Blue Cross and Blue Shield Association, said at the Chamber of Commerce event. "We do not have consensus on privacy, yet we are building [health IT] systems and architectures," he added, FCW reports.
That's the trouble with trying to wire a nation of 305 million people--and, perhaps, 305 million differring opinions--in a relatively short period of time, while data-control policies haven't fully been worked out. There's no time to waste, yet there may not be another chance if we screw this up.
On a less controversial note, yours truly will be hosting a FierceEMR webinar on Oct. 14 at 2 p.m. EDT, exploring how EMRs and other technology are changing medical transcription, hopefully for the better. It's free to register and participate. - Neil