Note: This transcript has been created with a combination of machine ears and human eyes. There may be small differences between this document and the audio version, which is one of many reasons we encourage you to listen to the episode.
Dan Gorenstein: All across the country, politicians are itching to restart their economic engines.
Hogan news clip: Nothing matters more to me than getting our economy back on track.
Abbott news clip: I have formed a statewide strike force to open Texas
Trump news clip: America wants to be open.
DG: They see the cratering budgets, the struggling businesses, the mounting unemployment claims. And in response, they have begun to release reopening plans and playbooks.
Some are little more than a prayer. Others are bigger and bolder.
No matter how simple or how sweeping, all of these plans share the same achilles heel: data.
Janet Hamilton: Without good data we cannot make good decisions.
DG: From the Annenberg Studio at the University of Pennsylvania, I’m Dan Gorenstein, and this is Tradeoffs.
For the first time, maybe, in her whole life people know who Janet Hamilton is.
She’s not quite Fauci famous, but she’s getting there.
Janet Hamilton: [Laughs] I don’t know about famous, but it’s wonderful to actually have people understand a little bit more about the really wonderful work that epidemiologists do.
DG: Janet is executive director of the Council of State and Territorial Epidemiologists.
People are finally learning about the job because reopening the country requires these scientists – and the health departments where they work – to run a kind of disease tracking triathlon.
The events: testing, tracing, and surveillance.
First up, testing.
The public health department gets notified when someone tests positive for COVID.
That starts the second leg, tracing, where public health workers track down an infected person as fast as they can and figure out who else has been exposed.
That leads us to the last leg of the race: surveillance.
JH: So we’ll look at the total number of tests that are done…emergency department data and just visits to health care in general. And all that information is put together to help us make policy level decisions that can be good for everyone.
DG: Now imagine doing a triathlon in the pouring rain, with a flat tire, and weights around your ankles.
That’s the position we’ve put our public health workers in, says Janet, by denying them the tools that they need to do this job.
JH: We are still functioning as though computers did not exist…faxes, phone calls, spreadsheets.
Sfx: Fax machine ad
DG: Over the past ten years the country’s spent billions digitizing our health care data.
Almost every hospital, doctor and lab can now share data about COVID-positive patients. But many public health departments aren’t even set up to receive the most basic electronic information.
And that’s left them dangerously out of the loop…like getting incomplete lab results.
JH: We’re seeing address and phone number missing as much as 50 percent of the time. Race and ethnicity data is missing as much as 85 percent of the time. And so instead of getting those results, we’re spending time just trying to find who is this person and where are they located.
DG: Epidemiologists understand that’s time lost as the virus rips through retirement homes, hospitals and jails.
Rich Danila: Our largest public hospital in the state, they began testing for COVID-19 and had many positives, but they never reported them to us because they had no way of doing that…
DG: Richard Danila is the deputy epidemiologist for the state of Minnesota.
Danila: We finally had to do a work around and all of a sudden we found out, you know, it had, basically, 200 cases that we didn’t know about. And so when we called up the cases, the case was already, you know, 20 days old.
DG: If Rich’s department were hooked up to hospitals electronically, he could get the information he needs in minutes.
Instead, he’s got two full-time employees spending entire days answering basic questions.
RD: If we want to know how many people are in the hospital, we have to go rely on old-fashioned shoe leather, calling up every hospital, emailing every hospital.
DG: Richard says this situation makes him grind his teeth.
RD: We’re touted as one of the best infectious disease departments in the country but in terms of our our data, our electronic data, you know, we’re way down in the pack.
DG: Janet Hamilton says it’s a story she’s hearing across the country.
JH: It’s hard. It’s hard to know that you could be doing a better job if you had that information immediately available to you. But you just can’t.
DG: In Colorado, some data isn’t just delayed, it’s MIA. And that has Katie O’Donnell of the Larimer County Health Department worried.
Katie O’Donnell: We know the next two weeks are going to be absolutely imperative to make decisions on whether we can continue to reopen or whether we need to slow down.
DG: The county’s disease database can only track positive test results. So Katie has no clue how many total tests have been run, and that makes it really hard to know if they’re doing enough testing or keeping the virus in check.
KO: We have to be able to know whether out of out of this many tests, are we going up or are we going down or is the percentage staying the same? But we have no idea, you know, did we run 100 tests and have 2 come back positive? Did we run 4000 tests and have 2 come back positive? We just, we have no idea.
DG: It’s hard to get out in front of the pandemic when public health department’s have their hands tied.
If people keep getting sick, our economy won’t get any healthier, says Arien Malec, a former federal health IT official.
Arien Malec: The big thing that’s hitting the economy right now is the epidemic. And the best thing that we can do to get the economy back is to get the epidemic under control. And the best thing we can do to get the epidemic under control are the public health measures that have worked in literally every other country that’s tried them.
DG: Public health officials across the country are under immense pressure to execute on what many see as the three keys to safely reopening: testing, tracing, and surveillance.
Doing that work requires rapid and reliable information about who’s sick, when and where.
But outdated and underfunded systems are making that data hard and sometimes impossible for health departments to come by.
So let’s talk solutions.
You’re probably thinking this could all be fixed with a big ol’ wheelbarrow of money. That would certainly help, says Arien Malec.
AM: The best answer I have for why we’re in this situation is that at the end of the day, when it comes time to fund public health, nobody gives a shit–until it really matters.
DG: The recent CARES Act did include some funding to fix public health’s data infrastructure…but only about half of what epidemiologists were hoping for.
And a bunch more money likely isn’t on the way anytime soon. So, Arien says it’s time to focus on getting the most out of what we already have and save loftier, longer term fixes for later.
AM: The Duke Margolis Center put out a set of policy recommendations that were all about the art of the now. What do you do in May? What do you do in June? Because you go to war with the with the army that you have, not the army that you want.
DG: Three key recommendations in that report from the Duke Margolis Center…
First, make labs responsible for tracking down the basic information like phone and address missing from their test results…and give them financial incentives to do so.
Second, have hospitals send along patient electronic health records automatically after a COVID test is ordered…or certain symptoms are diagnosed.
It’s known as electronic case reporting, and Janet Hamilton, a report co-author, calls it a game changer.
JH: The data is there. It is electronic. And if we had those electronic health records, much of this problem would be eliminated and we would have better case investigations and all those other key things that we really want to have to make the best decisions possible.
DG: One hospital in Florida added this feature to their EHR in less than two weeks. Just seven days later, they’d already generated more than 7,500 electronic case reports for their state health department.
The technology is being piloted in several areas of the country and Janet describes health officials as ecstatic with the early results.
Finally, the Margolis report emphasized the need to clear up a few points of confusion that have left some health systems hesitant to share their data.
This includes HIPAA, health care’s big privacy law.
AM: The steps that we put in the Duke Margolis report are the most basic, most obvious, simplest to implement steps.
DG: And yet, Arien still isn’t confident those steps will be taken, at least not nationwide. He says that would require a level of federal focus and support that’s been hard to find.
AM: We need a clear set of national priorities and we just don’t have one right now. When you’re in the middle of a crisis you’ve got to do a few things really, really well, rather than 20 or 40 things in a chaotic way.
DG: That lack of federal leadership was a problem long before this pandemic arrived.
Julia Adler-Milstein, professor of medicine at the University of California, San Francisco has studied health tech for the past decade.
Julia Adler-Milstein: There’s been no central planning, no one to say, well, no, these are really the types of organizations that need to be connected and this is the type of data that needs to be shared between them. So you get this sort of real patchwork or messiness when you put it all together where where, because it wasn’t designed from the top down, it’s sort of been built from the bottom up.
DG: It’s those failures that have some people–even academics like Julia–betting that a fix to this crisis comes from the one industry that’s known for demolishing the status quo.
JAM: You know, not that it’s not fraught with complexities, but I fundamentally believe if you know, if Google sent me something today that said you need to put this app on your phone, you need to tell me this data about you every single day. And if you did this, you could go back to your normal life. I would do it in a heartbeat.
DG: Every day that goes by without fixes to our data failures is a day the coronavirus spreads and our economy remains stalled.
To turn that tide, the public health experts we’re counting on are telling us we need to get data moving faster than this disease.
Whether those solutions come from Silicon Valley or Washington, they can’t come soon enough.
I’m Dan Gorenstein and this is Tradeoffs.