Who do Americans trust to handle their health data?

Knowledge is power

“Knowing that my medical history is out there has never bothered me, probably because there’s nothing I’m embarrassed by or that I’d feel threatened by someone having,” says former oncology patient Marissa H. In 2010, the 40-year-old mother of three was diagnosed with a rare form of sarcoma and underwent extensive radiation and chemotherapy at a specialty cancer center for sarcoma patients.

“As far as medical health data I don’t feel threatened, even if there was a breach,” she says. “I’m happy to share anything if it’s information that can help someone else.” Data sharing is extremely common among oncology patients like Marissa, who often recount their personal experiences on blogs and social media.

“My cancer was very rare, so I talk about it on a public Facebook page so others going through this can see what side effects to expect, what sort of impact it had on me and what my health status is now,” says Marissa, who is currently considered cancer-free. Like many cancer patients, she also participates in clinical trials and surveys that allow researchers to learn more about her particular disease.

More privacy, please

That “open book” attitude to data sharing isn’t held by everyone, particularly cardiology patients. While this demographic trusts healthcare providers with their medical data, they’re often the most afraid of this information being hacked. This often stems from fear of being dropped by their insurance company or being “found out” by an employer paying hefty insurance premiums for less healthy employees. After all, lab results for a patient with hypertension or high cholesterol can tell a story many would rather keep private.

Cardiology patients, however, aren’t the only group concerned about data sharing. “Automated systems are dangerous with so much hacking going on,” said Josh R., a former US military serviceman. “When you go to the clinic now it’s not just you and the doctor in the room. It’s you and anyone with access to your records online. It’s dangerous as far as doctor-patient confidentiality is concerned.”

His concern? Upon leaving military service, combat veterans often experience post-traumatic stress disorder. While an official diagnosis can provide medical and financial assistance, Josh said such labels could follow a veteran for life, whether applying for a gun permit or a job. “People are now afraid to go to their doctor and be honest about symptoms,” said Josh, who often talks to young servicemen and women readjusting to life back home. He compares the accessibility of medical data to the growing custom of employers monitoring current or prospective employees’ social media pages. “It allows employers to create designer employees,” he said.

Chronic illness in the digital age

For those with chronic health problems, electronic data sharing can be a tremendous time saver. Lauren T. is a 35-year-old food service employee born with a congenital heart defect. “I keep my medical history updated and in the cloud, which helps when you have so many different doctors,” said Lauren, who regularly prints out updated histories for each of her six specialists. “Some of my doctors aren’t in the same health system, so they don’t know which medications I’m on, what I’m allergic to or when my surgeries have been. I like electronic data sharing and actually wish there was more of it.”