Farrah Fawcett, Celebrity and Patient Privacy Champion, Dies at Age 62

Actress Farrah Fawcett died of cancer this morning at a Santa Monica, CA hospital. She’s famous for her rapid rise to pinup status, spurred by her role in the 1970s TV show Charlie’s Angels. Fawcett was the “blonde one,” sporting a trademark feathered mane that became popular overnight. She later proved herself as a serious actress, but she also became a symbol of courage and a champion of patient’s rights.

In an interview published in the LA Times last month, Fawcett told how she became suspicious that someone at UCLA Medical Center was leaking information about her condition to the National Inquirer: “…in a firm voice that betrayed no hint of her terminal illness, Fawcett described how she was deprived of the choice that most other cancer patients have: when, and even whether, to share information with family, friends or strangers.” (See part of that interview on video here.)

Fawcett was first diagnosed with anal cancer in 2006 and fought valiantly against the disease. But she was dogged by a continuous flow of tabloid headlines that were often incorrect, but still seemed to be based on leaked information. “Even when the tabloid reports were false, she said, they were based on a morsel of truth. When she went in for an eye exam, for instance, “they had to say I was going blind.” When she had a pap smear, “they had to say that the cancer had spread; I was having a hysterectomy”,” Fawcett told the LA Times.

She eventually set up a sting operation to catch the person who was doing the leaking. When Fawcett learned her cancer had recurred in May 2007, she withheld the information from most of her family and friends. Within days, however, the Enquirer was trumpeting the news. Fawcett said that when she confronted UCLA with her discovery, they refused to tell her who was responsible for the data breach, stating that “We have a responsibility to protect our employees.”

UCLA eventually revealed that administrative specialist Lawanda Jackson had sold the information to the Enquirer. Jackson had gone through Fawcett’s record more times that the actress’s own doctors, and received $4,600 for her snooping. Jackson pleaded guilty to a felony charge of violating federal medical privacy laws, but in a strange turn of events, died of cancer herself before she could be sentenced. The LA Times reported that Jackson had worked at UCLA for over thirty-years, and had recently started using her supervisor’s password to access medical records. She looked through at least 60 records, including those of Fawcett, Britney Spears, and California Governor Arnold Schwarzenegger’s wife Maria Shriver.

In response to this and numerous other patient data breaches, California enacted tougher medical privacy laws with higher fines. That hasn’t stopped all the snoopers though. In March of this year more than two dozen hospital employees were fired or otherwise disciplined at Kaiser Permanente’s Bellflower Hospital in Los Angeles for peeking into the medical records of Nadya Suleman, the “octo mom” who gave birth to 8 babies there. Kaiser was fined $250,000 under the new California law.

So what can hospitals do about such snooping? Kathleen Billingsley of the California Department of Public Health, Center for Health Care Quality, told HealthLeaders that hospitals could require anyone accessing a medical record to insert a code. “I would go in there and indicate through my code that I’m accessing that record, so there’s immediately a link between myself as a healthcare professional that I am accessing that record,” she said. Many hospitals claim they have such privacy guard’s already in place, and Lawanda Jackson got around the code problem by stealing her supervisor’s.

It’s not just celebrities who are at risk from this kind of snooping. So, if your concerned about it, ask your hospital and other health care providers what precautions they take to ensure patient privacy and what your rights are if you suspect your records are being accessed by unauthorized staffers.

In the end, Farrah Fawcett decided to bare it all in a television special called “Farrah’s Story,” which documented her final battle with the disease. It’s sad that she had to die this way, but especially sad that she was robbed of her privacy at such a difficult moment in her life.