Doctors and nurses usually want to know a lot about a patient’s medical history to treat them effectively. But does, say, your podiatrist really need to know about the abortion you had 10 years ago?
“When records became electronic, it became a little easier to share them,” says William Tierney, associate dean of clinical effectiveness research at the Indiana University School of Medicine. “The question became: Who owned the data?”
Health care privacy laws are among the most stringent that exist. But upholding strong patient privacy is a major emerging question as more hospitals, clinics, and doctor’s offices adopt electronic medical record systems that make it easier to maintain and share comprehensive histories of a patient’s health.
Today, patients do have to give permission for doctors to share their records with other health providers. But usually that permission is all or nothing, applied to everything in the record, or may involve blanket approval for all health workers affiliated with an entire hospital system.
As the federal government spends billions of dollars to subsidize the adoption of electronic health records in the industry, this existing way of operating is under debate today. The question is whether some systems might offer patients the option to determine which health professionals they want to have access to their electronic medical records and to what parts of that record. (Though, no matter their choice, information would remain private and secure.)
Tierney, who also heads the Regenstrief Institute at Indiana University, recently led the first study that attempted to see what this looks like in the real world. Engineers spent more than two years building custom software that an inner-city clinic in Indianapolis used for six months. Unlike the commercial health record systems available today, the system allowed patients to hide some of their health data–say their reproductive health history, or their use of antidepressants–or hide their data from certain kinds of doctors, like a podiatrist.
The results were surprising to the researchers. Given the option, 49% of the 105 patients who participated decided to withhold at least some information from their doctors. Four patients went so far as to withhold all of it, meaning every time they saw a doctor, they’d start with a clean chart. Every single patient, even those who wanted doctors to see all their data, said they wanted to be asked.
In today’s lawsuit-driven world, most doctors, nurses, and others in the clinic were not as enthusiastic about not having all information available to them. Some were fine with it, if it was the patient’s choice, but others strongly objected if it meant they may not providing the best possible care. The trial health record system, therefore, was built with a “break the glass” feature, which allowed any doctor to override the patient’s preferences at any time. The system, however, would record each instance the glass was broken.
On the other hand, there is a medical case for allowing more patient control over records. Many people simply hide sensitive information from their doctors as it is today, and so giving patients more control could increase how much information they feel comfortable sharing–and improve their care in the process.
“There’s this tension between patients having confidence that the information about them is not going to be leaking and having control over it versus the health care providers, especially the physicians, who can’t practice high-quality care without all the information,” says Tierney.
Either way, these choices are a long way off from most doctor offices. The study introduces more questions than answers, and would be technically hard to implement in many of the existing electronic health record systems today.
“[Software vendors], they don’t want to have to deal with this right now,” says Tierney. “Some of the health systems are actually interested in it. They know that their patients want this. And they figure if they had this capability, they’d at least want to discuss it as an option.”