What is a health information exchange?
It's a computer network that links doctors so they can exchange patients' files with the click of a mouse. By sharing your medical history, physicians can make quicker and better-informed decisions about your health.
Two big concerns about the exchanges involve the lack of notification about such use of patients' records and the consequences if this sensitive information were to fall into the wrong hands.
How do I know if I'm in an exchange?
Ask each of your doctors. If they don't know, or if you get an answer you're not satisfied with, you might want to look at this list of organizations that have received federal grants to help build exchanges and call them directly.
If my medical information is in an exchange, how do I get it out?
This varies by state. Some states such as New York have strict opt-in policies, which means nothing will be shared unless you first approve. Others, like Maine, offer an opt-out model that allows patients to request to be kept out of the exchange. The opt-in or opt-out process is generally handled at the doctor's office.
What kind of data can they see?
Most everything that's in your medical files, from doctor's notes to lab reports to medication history. The type and amount of data collected varies.
Mental health and drug-treatment records aren't included in the exchanges. However, sometimes that information is included in primary-care physician notes and winds up in the exchanges, anyway -- causing concern for some patients.
Where is this all going? A nationwide health information exchange?
The U.S. Department of Health and Human Services says there is no plan for a national exchange. Still, the government is pushing technical standards that will allow exchanges in different states to communicate with each other, so those with similar privacy policies would be able to link up. Differing privacy policies are a key impediment to a nationwide exchange.
Will my information be sold?
So far, large health-information exchanges say they are not selling data, but acknowledge that they are accumulating data that would be valuable to researchers, health companies and marketers in the aggregate. It can only be sold in anonymized form. There has been concern about whether exchanges will start selling data if their finances falter.