Patients worry about their medical privacy during coronavirus outbreak

The coronavirus outbreak has brought all kinds of new concerns, from social distancing to self-isolation. And on today’s Daily Dose: medical privacy. Dr. Michael Wilkes, professor of medicine and global health at UC Davis, says his patients are worried about how their medical information might be used.

“I do hear a lot, ‘If you test me, what's going to happen? Who's going to know? Is this going to be misused in some way?’ I mean, I think people know that information, particularly medical information, in the wrong hands can lead to discrimination and harassment and other forms of reprisal. So as they hear about COVID investigations, they're a little bit worried,” says Wilkes.

KCRW: How do patients fear their info might be used?

Wilkes: “I think that this idea of invasion of privacy is of paramount importance, particularly to vulnerable people, people that have cancer or HIV or whatever.

There are two concepts here that are also tied. One is contact tracing. And the other is this idea of isolation and quarantine. And there's a little bit of misinformation, I think, about what those are. … The isolation and the quarantine, and even the contact tracing, derive from both state and federal powers. The federal powers actually come from the commerce clause in the Constitution.

And when we talk about isolating people, that means we're separating sick people from healthy people. When we’re talking about quarantine, I think that some of the government folks are misusing that. But quarantine actually refers to separating people who have been exposed to a contagious disease -- from others to see if they're going to be sick. … As we do that, we collect information. That information goes into a public health repository. It is very well protected.

… I have not heard of any abuse or release of inappropriate information.”

When medical info goes into this repository, who is it generally shared with, and why is it shared?

“If we think about historically how we've used contact tracing and quarantine, first of all, federal quarantine laws haven't been used since 1918. So this is not something that's used very often. It's much more often used at the state level.

But there are just a handful of diseases, some old friends like diphtheria and tuberculosis and yellow fever that can be quarantined, that we can do contact tracing.

But there's also this category of severe respiratory disease and flu. And so that's where all of this is coming from. And the idea is that if we can quarantine people, we can both understand the disease and stop the spread.

… It's not just theoretical. … Smallpox was a disease we do have a vaccine for. But we eliminated it from the face of the earth -- not by vaccine, really, but by quarantine and isolation. So that's a huge success story.

The information goes to the public health department. They use it not to harass people, but to understand the disease, to understand where there are pockets, to look and see whether interventions are necessary, sometimes to identify pockets for high-risk screening. If we do get treatments, they would identify high-risk areas to give vaccines or treatments early.”

There is a precedent for sharing this kind of medical information. Is it generally when there is a public safety concern?

“It’s only shared within the government. So even as a physician, I can't call the health department and get information on any given individual. And they try as much as they can to use this information as an aggregate.

So they would put into a database people's names, their age, perhaps their risk factors. But not their names unless they were going to do contact tracing.

And contact tracing is -- it goes back. We use it most frequently in recent history with sexually transmitted diseases. The idea is that there's an index case. We sort of dramatically sometimes call them patient zero. We interview them about their behaviors and ask them about their contacts. And … a well-trained public health person goes from door to door, looking for the people that are vulnerable. The idea is not to out them or embarrass them, but to give them either early screening because they've been exposed to a disease, or to give them treatment. And it can be lifesaving.”