The recovery bill's plan to digitize people's health records needs an opt-out provision.
The economic recovery package being debated in Congress sets one ambitious goal: Put every person's medical records in digital form. The $20-billion five-year plan would link records to a nationwide health network that aims to improve patient care and reduce rising costs. But at what cost to privacy in this most personal part of life?
Advocates see great benefits in transferring people's lab results, medications, X-rays, dentistry, pre-natal care – in short, their medical history – from paper in a file cabinet to an electronic network. Wider access, for instance, can reduce emergency room errors and eliminate unnecessary procedures.
And yet, surveys show Americans want modernized records, but worry about misuse – a worry that has held up past "e-health" legislation.
A 2006 survey by the Markle Foundation found 80 percent very concerned about identity theft, 77 percent very concerned about medical information being used for marketing, and more than 50 percent worried about employers and insurers having access to their personal health information. The American Civil Liberties Union reports at least a third of Americans don't share their complete medical histories for privacy reasons.
The ACLU and other privacy groups hail stronger privacy provisions in the stimulus bill that passed the House last week – even if the bill's "not perfect," as the group Patient Privacy Rights puts it.
The House bill – and similar e-health provisions in the Senate – spreads accountability to more types of health organizations; it includes audit trails to trace who has looked at records, data encryption, and authority for individuals to see their records; it strengthens enforcement and improves patient notification of breaches.