Attention doctors and vendors: Selling patient data without informed consent is now a federal crime

By Deborah C. Peel. MD
09:35 AM

Another misguided, uninformed EHR vendor will discount the price of EHR software for doctors willing to sell patient data! According to CEO Jonathan Bush, "Athena might be able to halve the amount that physicians pay to use its EHR."
Great business plan: Entice doctors to violate the law and the Hippocratic Oath.
(See the story on Athenahealth).
How is it possible to be so unaware of what the public wants? The public doesn’t want anything new or earth-shattering, just restoration of their rights to control who can see and use their medical records in electronic systems.
Not only is the practice of selling patient data an unethical PR/"optics" nightmare, but new consumer protections in the stimulus bill require that patients give informed consent before their protected health information can be sold. Violators are breaking a federal law.
The problem is that health information is an extremely valuable commodity, so people are always trying to use it without consent. Patients' rights never seem to interfere with these business schemes.
More quotes from the story:

  • "Athena's EHR customers who opt to share their patients' data with other providers would pay a discounted rate to use Athena's health record software."
  • "Athena would be able to make money with the patient data by charging, say, a hospital a small fee to access a patient's insurance and medical information from Athena's network."
  • "Caritas Christi [Health Care] initially launched Athena’s billing software and service in October and then revealed in January that it decided to offer the company’s EHR to physicians."

How many patients would agree to sell their health records to help their doctor’s bottom line AND at the same time put their jobs, credit, and insurability at risk?
What will Athena's informed consent for the sale of health patients health data look like?  Will Athena lay out all the risks of harm? Will Athena lay out the fact that once the personal health data is sold, the buyer can re-sell it endlessly to even more users? Will Athena caution patients that once privacy is lost or SOLD, it can never be restored?
Many vendors do not realize that the lack of privacy and lack of trust is a major barrier to patients seeking healthcare. HHS reports 600,000 people a year refuse to get early diagnosis and treatment for cancer because they know the information won't stay private, another 2,000,000 refuse early diagnosis and treatment for mental illness for the same reasons.
If you wonder what patients expect from electronic health systems, check out my slides (PDF) from a recent Health Innovation conference at the UT McCombs Business School.
Deborah C. Peel, MD
Founder and Chair
Patient Privacy Rights