October 18, 2020

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Runtime: 00:23:47

Below is a transcript of the Bonus episode. We encourage you to listen to the episode. It was written to be heard, not to be read. 

Sara Ganim Narration: As our team at why don’t we know was wrapping up the reporting for this season OVID- 19 hit. 

NBC News: Statewide stay at home order.

ABC News: Ordering residents to stay at home

KTLA 5: The Golden State is in shutdown mode.

USA Today: That’s 82% of the people in this country now being told to shelter in place 

Sara Ganim Narration: and as we all know, it changed the way that everything worked, including us. We had to re-jigger some things and figure out a way to work remotely and still get it done, just like everybody else did. Oh wait, not everybody. 

Somehow government agencies everywhere had a particularly hard time making the switch, in so many cases,  they instead opted for complete shutdown mode and that meant a lot of FOIA offices just went dark, stopped working.

UT-San Antonio voicemail box: You have reached a number that has been disconnected or no longer in service…

Terry Mutchler: Now that COVID-19 has hit, that’s become the new cover for further delaying transparency

Dave Cuillier: Sorry, no, it’s not essential, we’re going to take longer, or we’re not going to deal with it.

Sara Ganim Narration: Hmm, while some adjustment period is totally understandable, not all of these excuses seemed legit. Like for example, the FBI, announcing that it would no longer process electronic requests for information.  If you want something, now you gotta send it via snail mail. 

No joke, they put out a statement saying that because of covid  “the FBI  is not accepting electronic freedom of information requests, but you may still submit a foia request via standard mail.” Huh? I’m wracking my brain, but I can’t figure out how using the postal system versus an electronic filing system, will help the FBI navigate foias during COVID-19.

Terry Mutchler: I mean, it kind of bends the mind in a different way. Shouldn’t we be encouraging electronic submission versus paper submission?

Sara Ganim Narration: The state department did it worse suspending all requests indefinitely.  So did the city of Philadelphia. The district of Washington, Portland, Oregon, San Diego and Fresno, California, the Chicago Police Department.

Louisville, Kentucky, told reporters asking for details of three weeks of pandemic spending numbers that it was “too burdensome to provide.”

And states like Pennsylvania, Michigan, Rhode Island and Washington, they’ve all waived their timelines so that even if on paper it says they’re taking requests. Well, there’s no real expectation for a response any time soon.

You know, in a pandemic, I don’t think you’ll find too many Americans who would agree that less information is the correct answer. 

Dave Cuillier: Of course, government agencies, including universities should be completely transparent in how it’s dealing with the emergency. There’s no downside with that.

Sara Ganim Narration: And let’s just be clear, in case there is confusion.  Government agencies are equipped to figure this out. and i know this because some of them are doing it right. The EPA, for example, pretty quickly moved it’s FOIA staff to teleworking and announced that requests would continue to be fulfilled. So, the notoriously underfunded EPA can figure it out but the FBI can’t?

From the University of Florida’s Brechner Center for Freedom of Information, I’m Sara Ganim, and you’re listening to an episode of ‘Why Don’t We Know’ the podcast that dives deep into data and comes out with real stories. 

Let’s start in Florida, our home state, the Sunshine State with some of the best Sunshine Laws in the country. Unless, you stumble upon a gaping-wide loophole like this one. In Florida there is a law on the books, it’s relatively new from 2017 and it says it “provides exemption from public records requirements for campus emergency response.” Here’s foia expert Dave Cuillier again explaining

Dave Cuillier: Essentially, exemptions passed after 9/11 will prevent terrorists from taking advantage of government information to hurt Americans. 

Sara Ganim Narration: Seems like a good law keeping terrorists from seeing our emergency response plans, right? But back in March, when Coronavirus was looming and universities were caught off guard,  journalism students from the University of Florida asked their own university for its pandemic preparedness plan. It’s a totally legit question,  what’s the plan to keep us safe? but the University of Florida said, nuh-uh, you can’t see that and cited this exemption as a reason why.

Dave Cuillier: Well, clearly, viruses can’t read public records. That whole use of that exemption is being twisted. 

Sara Ganim Narration: Right, it clearly wasn’t meant for this. Even the lawmaker who co-sponsored that made it clear,  publicly,  and urged University of Florida to make their plan, or lack of plan, public. But, officials never did.

Dave Cuillier: If they’re hiding this information that could help people and could help people trust government pay attention to the warnings, then essentially, it’s killing people. And so it’s not hyperbole to say that in this case secrecy kills.

Sara Ganim Narration: if there are still any doubts, the student who broke this story, Dana Cassidy, she did her research and found that several other major schools, like the Universities of Mississippi, Houston, Villanova, Indiana State — they all published their pandemic response plans on the internet with no problem. In fact, Cassidy wrote, the U.S. Government encourages it.

Terry Mutchler: When you look at an agency or an elected official, and if that person is pro open government and believes in transparency in government, then they’re going to work to honor that.

Sara Ganim Narration: That’s Terry Mutchler again, a FOIA expert from our “What is a FOIA Anyway” episode.

Terry Mutchler: If you have someone that does not hold those tenants or beliefs whether it’s COVID or a crack in the sidewalk, they’re going to find a reason to delay, deny and discharge.

Sara Ganim Narration: From there,  gray areas turn into pitch black darkness, as secrecy becomes a cloak of cover in pockets all across the country. Like in Arizona:

CNBC: We want detailed information about covid-19 patients

Sara Ganim Narration: Where the board of regents got into a Twitter spat with the state’s attorney general over what is legal to disclose about the positive COVID cases on campus.

And as college athletes return to practice and fall sports, some universities are refusing to make public the number of athletes testing positive, hiding behind privacy laws that simply don’t apply according to numerous experts. 

Combine that with our reporting that college athletes weren’t part of the conversation about playing during such risky times. 

Ramogi Huma: They’re not being told about the risk. So there’s no informed decision. There’s no informed consent

Sara Ganim Narration: The confusion and the tendency to err on the side of darkness isn’t limited just to universities. In Oregon, the health authority refused to release key statistics that it relied on when re-opening despite public cries for the numbers. A federal prison in New York refused to hand over details of cases, despite claims that inmate symptoms were ignored. In Miami: 

WPLG Local 10: Medical examiners were reportedly told to stop releasing their data

Sara Ganim Narration: Health officials blocked reporters from seeing records of the number of deaths recorded by medical examiners. In Virgina, the state health commissioner refused to name the care facilities where outbreaks were occurring. 

NBC12 News: According to the state health department these facilities are not required to publicly post COVID-19 cases and deaths within its facility. 

Sara Ganim Narration: Because he said Health care facilities are people who deserve privacy under the law.  A similar sentiment came from Georgia, New Hampshire and Kansas, where officials said that they wanted to spare businesses from bad press and so they wouldn’t be identifying hot spots. 

Officials in Santa Clara County, California refused to even name the city where the first case was reported. Kansas officials called it “very very unusual” to release the names of places where outbreaks were happening. But Coronavirus is very, very unusual. It’s a worldwide pandemic more deadly than any we’ve ever seen. Plus, plenty of states are providing these very same details.

Although, even that reporting is controversial because, frankly, it’s all over the place. It’s not consistent. For example, some states provide details like age, race and underlying conditions. Some detail where the patient died, or contracted COVID-19. Some provide none of that.

And we know from our reporting this season that providing data that is inconsistent and impossible to compare can be akin to reporting nothing. 

Even hospital data collection has been voluntary and not forthcoming. Propublica reports, “having real-time data on hospitalizations would provide a window into the spread of the virus, and enable federal and state officials to identify hot spots and shift resources from one region to another.”

New York Times reporter Thomas Fuller reported on all of this back in late March and what he said was so poignant. I’m just going to read some of it for you.

He wrote, “as the Coronavirus spreads across the United States the limited disclosure of data by officials would seem to be a footnote to the suffering and economic disruptions that the disease is causing. But medical experts say that how much the public should know has become a critical question that will help determine how the United States confronts this outbreak and future ones.

He went on to say: “American researchers are starved for data, unlike their colleagues in other countries who are harnessing rivers of information from their more centralized medical systems. And local politicians complain that they cannot provide basic information on the spread of the virus to their constituents.In the perennial tug-of-war between privacy and transparency in the United States, privacy appears to be winning in the coronavirus pandemic.”

Fuller also notes that the emergency orders that were invoked in many places, give officials the authority to pretty much release as much or as little as they want. And opting for releasing the bare-minimum is the common approach. To make up for the lack of data, Fuller writes: “researchers are scraping information on cases from news outlets and other media accounts,” he said. “They are mainly relying on data from south korea, china and italy to try to predict the spread of the virus.” And he says, “experts also point out that it was the government’s suppression of information about the virus in china that allowed it to spread quickly before measures were taken to stem it.”

Ok, I’ve just dropped a lot of information on what we don’t know, but let’s take some time to look at why we don’t know, because a lot of these problems go back to misapplication and misunderstanding of a single law — the health insurance portability and accountability act. You probably know it as HIPAA. Either because officials don’t understand what it says or because they understand exactly what it says but are hoping you don’t understand what it says HIPAA is central here.

Carolyn Hartley: HIPAA is a huge law.

Al-Amyn Sumar: HIPAA was this sort of broad statute enacted in 1996. 

Sara Ganim Narration: I talked about this with two people 

Carolyn Hartley: The privacy rule went into effect in 2003. The security rule went into effect in 2005.

Sara Ganim Narration: Carolyn Hartley, a privacy compliance strategist and expert witness for HIPAA breach cases. 

Al-Amyn Sumar: HIPAA is not a simple thing to understand.

Sara Ganim Narration: And Al- AMyn Sumar. 

Al-Amyn Sumar:There has been a lot of confusion about it, not just at sort of the government level, but also kind of the lay-person level.

Sara Ganim Narration: A media law attorney who is trying to help news organizations get better data while covering COVID-19.  

Al-Amyn Sumar:  I see it cited on Twitter all the time in all kinds of different contexts where people say, “Well, HIPAA protects this,” and actually HIPAA has nothing to do with whatever they’re talking about.

Carolyn Hartley: It’s a huge law. It’s clouded in secrets. HIPAA itself really boils down to the consumers. Most people won’t even read their explanation of benefits.

Sara Ganim Narration: I’ll be honest, I didn’t have a great understanding of HIPAA before this either.  I talked about this with both of my guests.

Sara Ganim: So my totally layman’s understanding of HIPAA has always been that the line is drawn at identifiable information. Like if we really boil it down to the most basic thing, that’s how I’ve always understood it as a journalist. So it seems to me that a set of numbers does not identify patients, and therefore should not be covered by HIPAA. Am I wrong?

Carolyn Hartley: You’re correct. 

Al-Amyn Sumar: You’re right about sort of your intuitive gut about what individually identifiable health information means. 

Sara Ganim Narration: but Sumar says that HIPAA has very stringent provisions about how exactly information needs to be de-identified before it can be released to the public.

Al-Amyn Sumar: And there’s two ways under the regulations that that can happen. One is you basically have an expert. Who looks at the information and says, “There’s very little risk that if you release this it could be tied back to any specific person.” Or sort of more commonly, there are specific identifiers, 18 under the regulations that have to be removed from the information before it can be released. And that’s things like names, telephone numbers, and email addresses, but it’s also geographical information. And so, the regulations say you can only release the initial three digits of the zip code of the person. And only if those three digits encompass a geographic unit that has more than 20,000 people. If it doesn’t, you can’t disclose those digits.

Sara Ganim Narration: Ok so, maybe things are starting to make sense a little bit, is this why some government officials are hesitant to share COVID-19 cases? The well-meaning government official who is looking at HIPAA thinking 

Al-Amyn Sumar: I can’t even disclose. The number of cases per city, I can only disclose them on a countywide basis.” They’re looking at this provision and saying, “Well, that’s what HIPAA requires me to do.”

Sara Ganim Narration: but not so fast, because Sumar also told me that one of the most basic misunderstandings of the law is that it doesn’t necessarily apply to government entities. It’s mostly limited to health care providers.

That means that often a governor, or a mayor, for example can’t violate HIPPA, because they’re not bound by it.

Al-Amyn Sumar: That’s been happening a lot where different kinds of government agencies that don’t seem to provide any kind of the functions that covered entities provide are citing HIPAA. And it just wouldn’t apply to them.

Sara Ganim: Why is this so misunderstood? Is the law too complex? Is it poorly written? What’s the reason that everybody is coming down in a different way on what can be released and what can not be released? Because I’m looking at a list of cities and what they release, and it’s like,It’s all over the place. Even within each state. And that has a broader impact on research, and how healthcare in real time is provided. So, I’m just wondering why is this a problem?

Al-Amyn Sumar: Yeah, I think that’s a good question. I think it’s a bit of a technical law. And so, I think government officials are taking a more blanket view that HIPAA just applies to anyone that comes into the possession of health information anywhere, which is just not true. I think there’s also insufficient attention being paid to the exceptions that exist under HIPAA. 

Sara Ganim Narration: This one is really important. 

Al-Amyn Sumar: Disclosure is permitted if it’s necessary to prevent or lessen a serious and imminent threat to the health or safety of a person or the public. And this seems like exactly the kind of situation when government officials… Maybe they need to be taking a little bit of a more aggressive view of the law. But they need to be saying if we don’t give the public full information. But I mean nobody’s asking… Or at least none of the press that I have spoken to, or have seen doing this, they’re not asking for names. They’re not asking for street addresses. They’re not asking for telephone numbers. They’re just asking for, can you tell us what longterm care facilities have been affected? Can you tell us how many cases there have been? Can you tell us how many deaths there have been? Can you tell us what cities these outbreaks are occurring in?

Sara Ganim:  And- Basic information. Very basic information.

Sara Ganim Narration: Hartley told me all of the confusion over what can or cannot be released. It all boils down to one thing: Politics.

Carolyn Hartley: The Office for Civil Rights, OCR that is under the agent department of HHS…

Sara Ganim Narration: HHS is shorthand For Health And Human Services.. 

Carolyn Hartley: they have already issued nine guidances since March, 2020, about how you can release information. So if some organization is saying that we can’t release it because of HIPAA, well, they need to go back and read the guidances because the guidances say, yes, you can. This is a pandemic. We’ve got to protect our people within each one of our States. 

Sara Ganim Narration: anyone who says differently  

Carolyn Hartley: That’s a misrepresentation of what the law allows you to do or says you can do. And in my mind is really, from the expert witness perspective, it’s a disservice to the people in that community to not release that information, and hide under HIPAA, because they can’t hide under HIPAA, that’s not an umbrella. 

Sara Ganim: I know that the law is complex, but I just go back to my own experience. So, when I was a small town, super small town reporter, and there would be a car accident or another event where there was an injury involved, HIPAA still allowed us to call a hospital and ask if a person was in critical condition for example, without any waivers, without any other information. We could say, “Is Joe Smith in critical condition in your hospital?” And we could get an answer. Yet I can’t know if there’s a pandemic. During a pandemic, if there’s a COVID outbreak in my neighborhood. And when I think about that, just, I know that’s a super simplistic way of looking at it, but this is my personal gut reaction to all of this, is how can the law allow for one thing and not the other? And I don’t understand.

Al-Amyn Sumar: Yeah. It really just doesn’t, It doesn’t make a lot of sense. I think what we’re seeing is that the failure to be transparent about this is not only endangering public health, because people don’t know where outbreaks in their communities are happening. They don’t know what longterm care facilities have been affected. And it’s also just undermining trust in government that… How can we have faith in what our government is saying about the pandemic at all? On any subject when they can’t tell us like even on a citywide basis where the cases are. I think that’s… That’s one of the most staggering things is like in many states, county officials are saying, “We can’t tell you anything more than the number of cases that exist in a county. We can’t tell you the city that they’re in. We can’t tell you obviously what neighborhoods these people are in.” And it just really doesn’t make sense.

Sara Ganim Narration: So, at the end of the day, our country, the richest country in the world, can’t get it’s act together to deliver life-saving information in a consistent way. Instead, we have mass confusion about what the law says about disclosing critical data. 

Carolyn Hartley: Yeah. We’re kind of victims of our own freedom. In a communist country, you wouldn’t have that freedom. The communist government would come in and say, you tell us who’s got COVID, who’s been diagnosed, give us the names and the people you’ve been around, and we’re going to contact every one of those. In our country where we do exercise the luxury of freedom, unfortunately, that boils down to whether or not the public health authority, or the individual nursing home decides that they want to share that information.

Sara Ganim Narration: I’m going to be honest, I didn’t come away with what felt like a satisfying answer here. Maybe it’s the uncertainty of the pandemic compounding all of this but it’s just very frustrating to think that a federal law could be mis-interpreted and manipulated in such a great fashion during such a critical time. 

I mean, isn’t that why we have federal laws? so that we can have some sort of unity when it’s most important to our country? It brings me to another federal law that we know is often misunderstood, manipulated and mis-applied. HIPAA’s twin sister — FERPA

FERPA is the federal educational rights and privacy act 

Laura Dunn:  it is one of the worst written laws of history

Sara Ganim Narration: and FERPA  is the focus of part two of this season 

Brooke Moore: We needed that information the first couple of days of his accident, because we didn’t, the doctors really didn’t know what all injuries he had. 

James Buckley: That was, that is outrageous that they should be denied that information.

Sara Ganim Narration: That’s next time on Why Don’t We Know. 

This episode was written and produced by me, Sara Ganim.

The associate producer is Tori Whidden.

This episode was edited by Amy Fu.

Music for this episode was composed by Daniel Townsend.

Audio mixing was done by Luke Barrientos

The executive producer is Frank LoMonte.

‘Why Don’t We Know’ is a production of the Brechner Center For Freedom of Information at the University of Florida.

A special thanks to the Hearst Family Foundation for proving the grant money that supported this reporting.

For more information about this episode, visit www.whydontweknow.org