HIPAA, COVID-19 and Info

When I was a reporter in the early-1990s, in a lot of ways getting information was easier than it is now. For example, if we were covering a car crash, and the victims were transported to the hospital, and we wanted to know how those patients were doing, we would pick up the phone and call the hospital.

And we weren’t calling a public information officer. We would call directly to the nursing supervisor’s desk. Some nursing supervisors were more cooperative than others, but in general, we would be told the general condition of each patient: critical, serious, fair, or good.

We could also find out, “Was the condition stable or not?” (Contrary to popular belief, “stable” isn’t a condition. Stable just means your vital signs are stable, not fluctuating. As some have said, “You can be dead and be stable.”)

I digress. Back then, it was much simpler to get information on a patient connected to a news story. And a lot of people didn’t like that. We never actually obtained detailed personal health information on a patient, but even our ability to obtain the general condition of a specific patient understandably rankled some folks.

To be honest, in terms of patient privacy, we were the bad guys.

Then along comes HIPAA, the federal Health Insurance Portability and Accountability Act.

I’m no expert on HIPAA, but in my line of work, the upshot of this 1996 legislation is that patient privacy is protected, sometimes to a fault.

Believe it or not, even though I’m in the information business, I think patient privacy in general is a good thing. But boy, has HIPAA come home to roost in some frustrating ways as we deal with the unprecedented COVID-19 pandemic.

Health care professionals and government agencies alike are almost militant in their application of HIPAA, to the point where we have had difficulty obtaining some basic, non-private information that the public wants to know.

We get beat up for it almost daily on social media. We will post a story giving all the information that’s been publicly released, and then one of the omnipresent social media wags will gripe at us:

“You’re just trying to scare people. Why don’t you tell us how many people have RECOVERED from the coronavirus? You’re just sensationalizing it to make people afraid.”

Or this: “Why don’t you tell us where the fatalities are occurring? People are dying all around L.A. County. Why are you hiding the locations from us?”

I know. Your local news organizations are convenient targets when you’re home, isolated, frustrated, afraid, and suffering from Stage 4 Cabin Fever with a computer keyboard in front of you.

But believe me, we’ve been asking the same questions you have. And often we’re just as frustrated.

Some of the unanswered questions are a result of HIPAA. Others are simply a result of the fact that some things we want to know, aren’t known.

In that latter category: How many people have recovered from COVID-19?

There are a couple of reasons we don’t know, and as much as some folks might want us to, we refuse to just pull out a number from where the sun don’t shine.

First, it’s impossible to know how many people have actually had it, because some cases are mild, and some who have the disease caused by the coronavirus never get it confirmed with a test.

And, among those who are confirmed, many experience mild symptoms, are never hospitalized, and are sent home to self-quarantine until they feel better. Hence, there’s a gaping hole in the tracking. No one’s fault, really.

Then there are the fatalities. The county holds a live-streamed press conference every weekday in which they release quite a bit of useful and important information, including updates on the number of confirmed cases, the numbers of people hospitalized, and the numbers of people who have died as a result of COVID-19.

Where are the deaths occurring? They don’t tell. They won’t tell. And I find it hard to believe giving us a breakdown of the geographic locations of those fatalities within the county would violate anyone’s privacy.

They do provide a general breakdown of where the confirmed cases are, but even then, if the number of cases in a particular area is less than five, they won’t say whether it’s 1, 2, 3, or 4. Why? Supposedly, because acknowledging one or two cases in a geographic area would endanger patient privacy, but five or more does not.

That makes no sense at all. And here’s a tangent: The state and counties are turning hotels into temporary homeless isolation shelters, and we have one here in the Santa Clarita Valley now, which, presumably, will be occupied not just by our own homeless individuals who already live in the SCV, but also newly relocated homeless individuals from elsewhere in the county.

Even if you agree with the measure, as a means of protecting homeless people from the virus, if it was across the street from your home, you’d want to know, wouldn’t you? Isn’t the location of a taxpayer-funded shelter something you’d reasonably expect to be public?

The county won’t confirm the location. Even though public funds are being used. Even though we all actually know it’s the Super 8 on Sierra Highway. The county was out there last week with official government vehicles and people in masks under an EZ-Up, checking in the new residents. We have pictures.

But nope, they won’t confirm the location. It’s quite a charade.

In this day and age, between HIPAA and the coronavirus and even before that, I feel like there’s a movement among government — not just any one government, but lots of levels of government — to impede the flow of information to the public, to put up roadblocks, to control access, to make anything and everything go through a press release or a spokesperson who carefully filters it all. Messaging is a higher priority than giving a straight answer to a fair question.

I’m not saying we should go back to the Wild West days of just being able to call the nursing supervisor at the hospital.

But I do think, in many ways, the pendulum has swung too far in the opposite direction. Even as we give due respect to patient privacy — which we should do — the default setting should be more information, not less.

Tim Whyte is editor of The Signal. His column usually appears on Sundays.