Seven years ago, I sat across from Farrah Fawcett in the living room of her Los Angeles condo. In what would be her last media interview before she died in 2009, she described her suspicion that an employee at UCLA Medical Center had shared details of her cancer treatment -- and the setbacks along the way -- with the National Enquirer....
Moreover, the government still needs to write regulations to implement provisions of a law passed in 2009. One would require health providers to give patients, upon request, a log of everyone who looked at their electronic medical record. Another would give patients whose privacy has been violated a share of the money HHS recovers. Finally, the government has yet to submit to Congress a report due in 2010 with recommendations for how to deal with the privacy of health information not covered by HIPAA.
For our part, we as patients -- and loved ones of patients -- need to stay vigilant. We need to ask for and keep copies of our medical records. We should look for errors and ask for corrections. Beyond that, we can request a list of who has looked at our electronic records (although providers may not have the ability to generate this or could simply say no). You can ask to speak to your hospital's or clinic's privacy or compliance officer with such a request...
After my mom died in 2013, I worried that her death might have been caused by a medical error. In the course of trying to investigate, I asked for a listing of everyone who had looked at her records. It was dozens of pages, and even though I'd been writing about health care for more than 15 years at that point, I couldn't make much sense of it. I didn't know who the people were or why they had looked at her records. I'm sure many, if not all, of them had legitimate reasons to do so -- to take her blood, process her prescriptions, adjust the settings on her ventilator, etc. That said, now that I know about the steps I can take to protect myself, I'm pretty sure I will take them going forward.
Ultimately, though, privacy boils down to trust. It has to. If we need medical care, we seek it -- and whether our records will be kept secure is generally not foremost in our minds.
I've thought often this year about how what Fawcett told me years ago foreshadowed a much bigger problem.
"I'm a private person," she said. "I'm shy about people knowing things. And I'm really shy about my medical" care.
"It seems that there are areas that should be off-limits."