Visit any hospital in the US and you’ll find that electronic health records have virtually eliminated the dusty, overstuffed file folders once lining office shelves. While some patients are comfortable with this change and don’t think twice about sharing personal medical data, others are uneasy about the accessibility – legal or otherwise – of such sensitive information.
According to the 2017 Future Health Index report, oncology patients have the strongest sense of ownership over their medical information, and value access to that data very highly. They are also the most likely to have experienced the automatic sharing of their medical data.
I’m happy to share anything if it’s information that can help someone else
– Marissa H.
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.
I keep my medical history updated and in the cloud, which helps when you have so many different doctors
– Lauren T.
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.”
Somewhere in the middle
While some patients sit strongly on either side of the issue, most fall somewhere in the center. “I’m not leery of technology, but when I’ve got a problem I prefer to talk to a real person,” says Terry W., a 49-year-old freelance writer. “When it comes to releasing medical information, I don’t care if it’s done electronically or through a person.”
Terry echoes the sentiments shared by so many in this technology-driven age of data sharing. “I have concerns about my personal health information, but I’m not going to spend my time fretting over possible security breaches,” he says. “That’s something hospitals need to worry about, since compromising people’s medical history could put them out of business.” He especially appreciates having online access to his healthcare provider. “It’s nice to receive emails or texts when it’s time for appointments, and reminders to help promote a healthy lifestyle,” he says. “I’ve found technology to be helpful. Sure there are risks, but just like with driving a car, you try to understand those risks and do what you can to protect yourself. It’s just a part of the world we live in.”