INTRO
PIPER
Hello and welcome to another episode of Inform Me, Informatics. Since our last episode, the COVID-19 pandemic has raged on—infections in the United States and around the world continue to climb, and more than ever, the pressing need for good public health informatics is apparent. In the U.K. just last month, Public Health England was horrified to discover that a simple Microsoft Excel spreadsheet error had led to the loss and subsequent under-reporting of 16,000 positive COVID test results.
Without good and accurate data about the pandemic, strategic disease control simply isn’t possible. For that reason, contact tracing has increasingly become a buzzword in not just the public health lexicon—but the public more generally. A few years ago, the only time I would hear the term “contact tracing” used was in presentations at NACCHO or CSTE’s annual conferences. But now, I see and hear the term everywhere: from friends and family members, on my social media feed, from the news, and so on.
In case you’re not familiar, contact tracing is a long-standing tool of shoe-leather epidemiologists and a foundational tool of public health more generally. Contact tracing follows positive case identification by tracking individuals an infected person may have come in contact with to monitor those people as prospective cases. Effective contact tracing can proactively identify the infection path a disease is beginning to take through the population, and basically cut it off at the source. Because COVID-19 has required public health to scale up their existing contact tracing protocols by orders of magnitude, many health departments are looking for some speedier and more advanced methods for enhancing existing contact tracing efforts.
For this reason, many companies have taken a fresh interest in contact tracing, and among them are Silicon Valley powerhouses Apple and Google. Apple and Google have recently collaboratively built an exposure notification API to identify individuals who have tested positive for COVID-19 and alert those who may have been exposed as a result of any interaction. Although this tool can speed up contact tracing and slow the spread of disease, it does not replace the important role public health plays in ensuring those exposed are assessed, informed and supported. But as Apple and Google began rolling out this tool, there was an urgent need for technology experts and public health experts to collaborate and bridge some key knowledge gaps. How can the experts building these tools ensure they meet public health privacy needs and standards? And how can experts in public health possibly keep track of all the tools being developed and their capabilities in order to select the appropriate one?
That’s where we come in. We at the Public Health Informatics Institute were excited to host forums—virtually, of course—that brought these two groups together to have discussions and uncover answers to those key questions. This jam-packed, four-week project resulted in guidance to support and enhance contact tracing efforts.
To learn more about this exciting work, I turned to a favorite guest of the show, our director here at the Public Health Informatics Institute, Vivian Singletary. Vivian actually led this multi-partner project, and I started out by asking her to explain more about how this innovative new tool works.
VIVIAN
Sure. So, Apple and Google co-developed an embedded new feature within the Apple iOS and Android operating systems. And these smartphones are used by nearly everyone in the United States and the API or the feature that they created aims to support contact identification and notification process. And they’re calling it the Apple-Google Exposure Notification Framework, that’s what they’re referring to it as. And this is really intended to supplement traditional tracing by allowing smartphone apps built in collaboration with the state public health authorities to anonymously notify consenting users of their exposure to a confirmed COVID-19 case, and that notification would come to that smartphone.
And this anonymous method for assessing exposure, it’s made possible by what they’re calling BLE or Bluetooth Low Energy protocol that smartphones routinely use to connect with other Bluetooth devices like your headphones or other kind of smart devices that we, you know, all are common and used to doing. And in this method, the smartphones that come into close proximity with one another, they exchange randomly generated BLE key codes, so, Bluetooth Low Energy codes. So, these codes are randomly generated in they’re stored on the user’s phone for 14 days. And the reason 14 days is just kind of like that life cycle of when one is exposed, how long it takes for someone to be symptomatic. And these keys can later be linked to a confirmed COVID-19 patient, if that patient chooses to share their keys.
One thing to note, the keys do not contain any personal identifiers, but rather a code associated with a particular cellphone for a very short period of time. And so, that’s one of the things that’s nice about this technology. You know, you may have been around somebody, let’s say on a flight, on a bus ride, that may later test positive. You will never know who you were around that you were exposed to per se, you know, if you’ve been out a lot, but it would give you that notification and, you know, then it would be up to your public health department to tell you what to do with that notification. You know, seek testing, for example, maybe one of the first things that they tell you to do or isolate. But that is how the Apple-Google Exposure Notification Framework works.
PIPER
That is so interesting. So, the people who are positive cases, they self-disclose through the technology once they receive their diagnosis, is that right?
VIVIAN
They self-disclose, but there are some steps that still have to be worked out by how they self-disclose because what you don’t wanna do is have people falsely self-disclose. There could be, for example, like some type of verification number that they may be given by a doctor or a public health department to say, “Okay, if you’re gonna self-disclose, then please enter this verification code,” so that it’s verified that it’s actual, a true COVID-19 case.
After learning more about the tool itself, I asked Vivian to help me understand the purpose of the forum organized and hosted by the Public Health Informatics Institute.
VIVIAN
The aim of the forum that we are hosting is really to provide a place where we can discuss and coordinate efforts across this space called Digital Tools for Contact Tracing. And our goal is to really provide some guidance to the states and local public health departments to assist their understanding of the digital marketplace of these tools that are out there to help support their contact tracing efforts. And in addition to that, where it makes sense, we’re bringing in technology companies and/or providing guidance to technology companies to help ensure that their technology actually meets the function and privacy needs and standards required by the state and local public health departments.
PIPER
Great. So, is the goal of this forum then to document or do a landscape analysis of the solutions that already exist around digital contact tracing and kind of reconciling those?
VIVIAN
So, good question. So, we have two deliverables that we are just about ready to release. And our design team, which is our core team related to this project that is guiding our work, have kind of set us on a two-track path to really follow two big things as it relates to Digital Tools for Contact Tracing. The first one is around the Apple-Google API. Because it’s such a novel technology that is being released during the time of the pandemic, many of the public health departments have not had a opportunity to, you know, move their attention away from just the core traditional contact tracing tools to really look at the Apple-Google API. So, one of the workgroups that we have is focusing on that and really just trying to release a white paper that will inform public health about, you know, what is this proximity notification tool and how they might go about piloting it to learn more about how it can dovetail into supporting their work and identifying cases sooner, but also connecting up to their traditional contact tracing systems and tools and how that may be used.
The second workgroup that we have is focused around more of the traditional contact tracing tools around, you know, a case identification, contact tracing, monitoring, health education, etc. And that workgroup is set to release a report that is a consumer guide of sorts that really lays out some tools that are currently in use by some jurisdictions, and that the criteria that CDC put out about contact tracing. And I think there’s gonna be maybe 15 or 16 of these tools that will be highlighted in this consumer reports of sorts, report, and it really is to just kind of lay out that environmental scan for public health for them to understand what’s out there and what categories within the contact tracing, I guess, bigger perspective that these tools might support.
[…]
PIPER
Great. So, it’s really about giving health departments additional tools to conduct contact tracing or supplement their contact tracing.
VIVIAN
Giving them tools to help them determine which tools they might select to do the contact tracing because they have to make decisions about scaling up contact tracing, and their current systems may not meet the amount, the level of contact tracing that they will have to carry out. So, some of them are being, you know, asked to make decisions on new technology and this will provide some guidance to them around that technology.
[…]
The work that we are doing, how it fits in with traditional contact tracing is that we are providing that forum to discuss these digital tools that may better support some of this traditional contact tracing because the number of cases that they are tracking at the health departments have grown exponentially. You know, typically the biggest kind of communicable disease that the public health departments basically get reports on are chlamydia. Not much has really done around the contact tracing for that. But this particular pathogen, coronavirus, if you do get a positive, in order to really stop the transmission of it, because it’s so infectious, they have to do the contact tracing. So, they are quickly trying to ramp up the number of actual contact tracers that they have available at the health department to be able to do this work, and they will need some type of information system to be able to support this work on a day-to-day basis.
[…]
PIPER
The last time that you came on the podcast, we were talking about health data ethics and concerns around health data ethics. So, as you’re working on this project, have you been reflecting back on any of those questions, or has there been any internal discussions around ethical approaches and things like privacy concerns?
VIVIAN
There have been some things that came up around data ethics. The one that most frequently comes up is, to your point, the discussion about privacy. There are some concerns about some of the new tools and technology that are out there. And most notably, the big one of concern was, you know, what Apple and Google were doing before they finally decided what they’re actually going to release. But in fact, Apple and Google, their API does not track any GPS location whatsoever. And so, there were a lot of bubbling concerns about that, but there are other technologies that do…other similar Bluetooth technologies that might actually track a GPS location.
So, I really think this is part of public health’s, you know, one of the things that they were going to have to deal with and work through their own state laws and local laws as it relates to this. And they’re going to have to really understand the citizens that they’re trying to support with these technologies, you know? And so, there’s been a lot of pushback, in particular, around the GPS tracking. The Apple-Google solution, basically what they’re exchanging are unrecognizable, I would call it, like, gibberish or codes that can’t be traced back to any one individual. And it does not do any GPS tracking at all. So, I think this is just something to continue to be discussed.
[…]
Is it ethical?
[…]
PIPER
So, more generally, how do you think that good data and informatics structures can be of service during a global pandemic, and why is work like this important right now?
VIVIAN
Sure. So, one of the… You know, I’m always asked, you know, “What is informatics?” And I always say, “Having the right information at the right time, so that you can make data-driven decisions.” And during a pandemic, that exact statement is even more critical because everything must be done in a very, very, very timely manner in order to basically interrupt the transmission of the disease.
[…]
Will schools open up? For some people, they still don’t know, you know, whether their public schools are going to open up again. And much of this data that we see collected day in and day out and posted or shared with us on the websites or television about case transmission, figures, hospitalizations, deaths, all of that is really critical because it’s going to help make some of these key decisions about whether you show back up in your office, whether, you know, your child gets on that school bus, whether you’re gonna go to that social gathering or, you know, just making your personal individual decisions on a day-to-day basis.
So, I think informatics is just right at the heart of this pandemic. And if we don’t have good information, we can’t make good decisions. And I’ve seen a lot of good information coming out timely. And I think we’re doing a good job. There’s still more to be done, but I think it’s been phenomenal what I’ve been seeing so far.
[…]
PIPER
So, on the last episode of the podcast, Dr. Carlos del Rio briefly spoke to some of the racial disparities that are being highlighted and deepened right now by the pandemic. And as we see the nation, as a whole, coalescing around this urgent need for racial justice, how do you see the goals of something like the Black Lives Matter movement dovetailing with the goals of public health?
VIVIAN
Sure. So, when I look at Black Lives Matter, I think they’re really getting at leveling the playing field as it relates to social injustices and racial inequities. And whether or not we wanna believe it, race, ethnicity, socioeconomic status, all play a part in the factors for disparities in health. And if Black Lives Matter can improve some of these social injustices and racial inequities, we, from the public health side, should be looking at how does that work together in concert with what we’re doing and how can we take their progress to also make progress in these factors for disparities and how do we improve those? So, I think a lot of what they’re focused on plays into many of the factors that we’re consistently looking at as it relates to health. And not only is it about black lives, but it’s about other lives, particularly those that are marginalized. And many of those lives that are marginalized are often found in ethnic communities. And so, I’m hopeful that the movement for Black Lives Matter will, you know, lead way to even bigger platform of us focusing on many of the communities that are marginalized and need health access and health equity as well.
PIPER
Yeah, that’s great. Very good perspective. So, I also asked Dr. del Rio about lessons that public health can take away from this pandemic for future work. And I wanted to ask you this as well. If you could go back in time, say 5 or 10 years, what advice would you give to protect against the coming pandemic?
VIVIAN
That’s a really good question. Hindsight is always 20/20, right? I think the attitude that we have to have, that we should have had and that we need to have going forward, it’s not a matter of if we’re going to have a pandemic, it’s just a matter of when. And throughout the last decade or so, we’ve been faced with different diseases, you know, none to the extent of what we’re experiencing with COVID-19, but we’ve had to deal with them. They come quite regularly. If you look at history, and I reckon it to my daughter who’s turning 10 this year, I told her, I said, “Well, you were born into a pandemic, which was H1N1, and now you’re turning 10 this year, and we’re in another pandemic,” but it’s at a different scale than H1N1 was, but nevertheless, it was declared a pandemic, right?
And so, I think we have to keep our eyes on the ball and understand that we have to, and specifically around information, and information technology, and informatics, we have to be prepared. And information is everything, and it helps us, you know, particularly when it’s timely, it can help us make better decisions. And so, I think that we need to continue to strengthen and better fund our public health departments so that they can have the resources and tools that they need, so that we can hopefully get ahead of the next pandemic.
So, I think some additional investment in those resources that, you know, we may not think, you know, some of us, who are not in the public health world, may not think that they’re important, but they’re critically important. And we’re relying on so many of our public health practitioners now and all of the hard work that they’re doing. They’re amazing, doing all this amazing work. But I know that they often feel understaffed and underfunded, and they definitely need that. And one way to do that is for us to, as we, you know, move out of this pandemic, prepare to rethink public health informatics, public health infrastructure, and how we might do it better, you know, in preparation for the next one. Because, like I said, it’s not a matter of if, it’s just a matter of when. And so, we need to prepare to do these after-actions and figure out what’s really needed and modernize our public health system moving forward.
PIPER
And finally, there’s that last question that every guest on this show gets asked. Vivian has now answered this question a couple of times for the show, but no one escapes! Just in case her answer has evolved, I had to ask: how does she personally define public health informatics?
VIVIAN
So, again, I’ll say this, it means the right information at the right time so that we can make data-driven decisions to protect the lives of our citizens here in the United States of America, and really all of the citizens of the world because we truly are a global world. You know, we move around so much, and I believe, just being in this pandemic, I knew that we were global, but it really opened my eyes just to see how much we’re not able to travel and be with, you know, people that we work with and support all around the world. So, we have to be sure that we are collecting the right information, getting it in a timely manner, and using it to analyze it and make not just retrospective, you know, analysis, but making models and forecast of what could happen in the future.
PIPER
Many thanks to Vivian Singletary for taking the time to talk with me about this fascinating and urgent project around contact tracing! Since Vivian and I spoke for the show, the work on this project has concluded, and all the forum minutes and resulting reports are available for your perusal at phii.org/contacttracing. Be sure to check it out!
This podcast is a project of the Public Health Informatics Institute, which is a program of the Task Force for Global Health. Visit phii.org to learn more about all of our informatics work! You can also find us on Facebook and follow us on Twitter @PHInformatics.
As always, the music used throughout our show was composed by Kevin MacLeod. Many thanks also go to my PHII colleague Jelisa Lowe, who provided a ton of background information, expertise and guidance on shaping this episode.
I’m Piper Hale, and you’ve been informed!
[BUTTON]
PIPER
You ready?
VIVIAN
I am ready.
PIPER
Great. Let’s podcast.
VIVIAN
All right. Let’s podcast.
