Two years of the COVID-19 pandemic have put a spotlight on the many challenges faced by public health professionals. A key one is the collection and analysis of public health data information that can then be used to determine strategies to control a disease outbreak. Joining the podcast is Janet Hamilton, the executive director of the Council of State and Territorial Epidemiologists. She discussed what was learned about health care data and analysis during the pandemic, why anemic funding of public health in many areas created problems, and how legislators can work with their state epidemiologists to ensure they have the information they need in the next public health crisis. Our other guest is Shannon Kolman from NCSL, who discussed how legislatures have responded to the public health data challenges laid bare during the pandemic.
Ed: Hello and welcome to “Our American States,". a podcast from the National Conference of State Legislatures. This podcast is all about legislatures, the people in them, the policies, process, and politics that shape them. I am your host, Ed Smith.
JH: A lot of folks know what an epidemiologist is now much more due to COVID-19, but they are there every day whether it is responding to a foodborne outbreak or monkey pox or any other new emerging condition.
Ed: That was Janet Hamilton, the executive director of the Council of State and Territorial Epidemiologists. She is one of my guests on the podcast. Two years of the Covid 19 pandemic have put a spotlight on the many challenges faced by public health professionals. A key one is the collection and analysis of public health data information that can then be used to determine strategies to control a disease outbreak. Hamilton discussed what was learned about data and analysis during the pandemic. Why anemic funding of public health in many areas created problems and how legislators can work with their state epidemiologists to ensure they have the information they need in the next public health crisis.
My other guest is Shannon Kolman from NCSL, who discussed who discussed how legislatures have responded to the public health data challenges laid bare during the pandemic. Here is our discussion starting with Janet Hamilton.
Janet, welcome to the podcast.
JH: Thank you so much for having me. I’m just delighted to be talking with you today.
Ed: Well, I think this is a very interesting topic and I think a lot of us who are not in your field have learned a great deal amount epidemiology and public health data during the past two years. In fact, I’d wager a lot more people know how to spell epidemiology now than they did in March of 2020. To get going, why don’t you tell listeners a little bit about the Council of State and Territorial Epidemiologists and the role that your member state epidemiologists play.
JH: Yeah absolutely. Thank you so much. So CSTE or the Council of State and Territorial Epidemiologists has been around since the 1950s and our members are epidemiologists or disease detectives that are leading epidemiologic activities in their individual states. So, our members work at the state, local, tribal and territorial levels. And they work as practicing epidemiologists and then some of our members, which form the council, are the actual state epidemiologists and that’s a codified position in all 50 states and does form a voting body within CSTE, which is the council. And essentially, they do the frontlines of all public health responses, acute, chronic and emerging. So, I think a lot of folks know what an epidemiologist is now much more due to Covid 19, but they are there every day whether it is responding to a foodborne outbreak or monkey pox or any other new emerging condition.
Ed: Thinking back to early 2020 when the pandemic suddenly was upon us, what kind of data did the nation’s leaders and policymakers really need to respond to that and did they get what they needed?
JH: Yeah, I think that’s a great question. In terms of the types of data that they needed. I mean the very foundation, which is really when and where cases are occurring and all the types of information about them that could be used to help others stay healthy and safe. I always say as an epidemiologist it’s the who, what, when, where and how of disease transmission. So, who is getting sick?. What disease or illness do they have?. What are their outcomes?. When did they get sick? And where did they get it and how? What type of transmission or exposure did they have? And I think the short answer of did they have what they need. I mean no. And I think we can all appreciate that.
Ed: I’m wondering what more specifically did folks like you learn about what data was missing and what needs to be addressed so that maybe we are in a better situation the next time something of this nature occurs?
JH: Yeah absolutely. I think what we really learned quite simply was that the disease was moving faster than the data and we did not have the systems or the workforce in place to keep up. We clearly learned that we have been underfunded for so long and we were still relying on paper spreadsheets, phone calls and faxes to try and piece together really complex information and a lot of information very rapidly. And it simply wasn’t working.
Ed: I think that’s so interesting the notion of fax machines being one of the pivotal ways to transmit information has come up in several podcasts I had around public health. And I don’t want to say anachronistic, but it certainly seems like maybe that’s not the cutting edge of technology that you might want to be on in trying to share this information or analyzing it.
JH: I think that’s exactly right. What we really learned is that we were not seamlessly connected with health care. And I think people had the expectation that if they took a test or they went to the doctor that that data would be rapidly and automatically provided to public health in the same way I think when you use a credit or a debit card and that information is immediately available to the bank and to the entire system. And public health data just was not flowing that way. And I think that’s one of probably the biggest challenges and hurdles for us to overcome is really that rapid and seamless connection with health care.
Ed: Do you think that progress has been made in the last two years?
JH: Yes. Absolutely. I think progress has been made. One of the best shining examples I think is in the space of electronic case reporting. Old way was a paper kind of disease card that would come into public health. And new way of course is the information that you give as a patient when you present for care is entered into an electronic health record. And with no work at all from the clinical team, that data is automatically provided to public health in the form of a case report. And we’ve made incredible progress in expanding electronic case reporting.
Ed: Well maybe that’s a little bit of a silver lining out of this very difficult last couple of years. Let me ask you about the term surveillance or disease surveillance, which is another one of those things that those of us not in your field heard a lot about and became a little more familiar with in the last couple of years. Can you explain what that is and what it means in practice and why it is important?
JH: Yeah absolutely. I think that the first thing is that sometimes it’s confused. It’s certainly a term that is used in other settings. For example, law enforcement, etc. And disease surveillance is not that. Disease surveillance essentially is being able to monitor when and where diseases and conditions are occurring across the population. So, in this setting, it’s an epidemiologic term. And the term public health surveillances could also be thought of as disease monitoring. I think one thing that is important to us as epidemiologists that maybe the term monitoring doesn’t capture and has also led to the use of the term surveillance within public health is that for us as epidemiologists it also means an acting upon the data in which it receives. And I think monitoring tends to sound very passive and really that’s why as public health epidemiologists in our own professional language and terminology we use the term disease surveillance.
Ed: I know from podcasts I’ve done with other public health officials the data systems are critical to understanding the data that is being collected. Can you talk about that aspect of the issue how you go from data to assist in how it actually helps you to understand what it means?
JH: That is such a great question. And I think what’s really true is that data has to come into the system, but it also has to be rapidly organized and turned into information for immediate public health action. And that’s the harder part. I think one way that I often try to help people think about it is it’s easy to have a tall stack of papers, but what’s harder to know is exactly what is on the paper and where in the stack is each bit of the information that you need so that it can be immediately accessed. And I think in that sense we have a ways to go so you know it’s very common of course that people go to health care multiple times. They will have multiple laboratory tests. They will have multiple places where they may have gone that could have led to their exposure. And what we want to do on the side of public health then is associate all of that with the individual so that we truly understand what has happened. And that’s where it is the organizing it and the turning it into information that can be very complex. And I think the other complexity that probably people can appreciate is that many times the pieces of information comes in without all of the connecting dots for us to link it appropriately. So if you went and maybe had a rapid COVID test that was done in a drive through clinic, maybe you only provided your name at the time of testing. But now on the public health side is that the same Janet Hamilton because when I get the test result, it doesn’t have maybe the full spectrum of information that I might need to link it across individuals. And that’s really just one example.
Ed: Well, that does make a lot of sense and makes it a heck of a jigsaw puzzle I would imagine for many of the people in your field to try to sort that out. There is certainly a lot of talk about lessons learned during the pandemic in the health field as well as in education or even in the legislature and I wonder among those lessons, are there other public health issues or emerging public health threats that can be addressed using an effective data sharing system as we’ve been discussing?
JH: I think one of the biggest lessons that we’ve learned in that data is power and we need to know all the aspects. We need to know both who is getting sick and maybe who isn’t getting sick and why. And what can we learn both about the individuals who are most impacted as well as the ones who aren’t so that we can ensure that we are really moving forward in a true space of health equity. Sometimes we are not identifying individuals because they are not able to seek or access care. And, of course, in those types of situations we really want to be sure on the public health side that we are really leaning in and ensuring that we are expanding the ways in which care could be accessed.
The other thing I think that is so important, of course, is to know characteristics about the individuals who are actually getting sick as well so that we can really, again, ensure that we are taking that information in and then producing the appropriate types of risk profiles and other types of data or information that is necessary for individuals to be able to make good, informed decisions about their own health and the health of their families. But also for policymakers, to be able to make the best types of decisions possible.
Ed: Well, speaking of policymakers, of course, our audience includes legislators, state legislators and legislative staff among others interested in state policy. I wonder what you see as some innovative steps that legislatures might consider to allow the policymakers and the other decisionmakers to receive the data on public health threats more easily?
JH: Thanks so much for that question. I think I’ll start by just focusing on a few really foundational items. And the first is that I think at the state level, it’s really critical for state legislators to understand the need to prioritize public health data systems and in particular the disease surveillance systems themselves. People don't actually know many times that these systems are primarily federally funded and at the state level, few states actually invest in providing annual appropriations to the disease surveillance systems and work as well as the epidemiologic workforce. So really trying to change the dynamic and ensure that there’s foundational funding to support this work every year I think is really critical.
It’s also true that most folks don’t know that on a data systems side, the first federal appropriations actually came in fiscal year 2020. Fiscal year 2020 true appropriations at the federal level to support data systems. So, it’s not a surprise why we were where we were because we had never said the backbone of our public health infrastructure is data systems. We are working in a data driven society and we’ve got to allow public health to keep up. Instead we were really just letting public health survive on paper. So really looking I think at budgets, I think is one really critical component. I think another really critical piece is to look at what types of collaboratives are maybe established and set up within states and jurisdictions to really bring health care and public health together to ensure effective working relationships. It’s not uncommon that there are breakdowns in terms of data transmission or state laws that maybe don’t fully support the integration of that health care data with public health. And I think forming different types of data collaboratives that include folks from health departments on the disease surveillance side and decision makers within health care so that that common operating picture and working together and really seeing less ways can be established and occurring and you are not trying to have conversations about data needs and data breakdowns when the system is incredibly stressed. And, of course, we know the system was stressed during COVID-19. It was stressed on the health care side in really incredible ways and that’s not necessarily the time to say and now I need a new data feed. And now I need to correct this type of information when you don’t necessarily have the relationships built.
Ed: As we get ready to wrap up, kind of along those lines, I wonder if there are two or three things you would suggest to state legislators that maybe they should think about to make sure they have the right data in the right place at the right time to make these policy decisions? It sounds as though resources is maybe at the top of that list.
JH: Yeah absolutely. So, I’ll probably close by really highlighting four things that I hope people take away. Data systems are critical. The public health surveillance systems themselves, No. 1. The people that staff and support those systems, so really having funding for both of those activities. The data systems and the people. A lot of state health departments don’t necessarily even have the right job classifications for epidemiologists, for public health informaticians or for data scientists to attract some of the most innovative individuals that they need. So, data systems and people and funding for them. The third having a good collaborative process that is data driven between health care and public health. And having a regular framework to bring those folks together. And I think the fourth thing that I would love to highlight of course is involve your state epidemiologists. It’s no different than in clinical care when you wonder what’s wrong ask the patient. And I think we saw many times that there was so much stress and strain in the system that we had lots of good will and intent, but people weren’t often asking the state epidemiologists what are the most important things that we can do to help you close your data gaps. So, I would really encourage folks to have some really strategic sessions with their state epidemiologists.
Ed: Well that sounds like very good advice Janet and I thank you so much for taking the time to fill us in on this. It’s something that I think pretty much everyone in the country realizes this is kind of critical to our ongoing public health efforts so. Thank you and take care.
I’ll be right back with Shannon Kolman from NCSL to discuss steps legislators are taking to improve the public health data they have in the next public health emergency.
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Ed: Shannon, welcome to the podcast.
SK: Thanks Ed. I’m happy to be here and I’m excited that we are able to devote this time to talking about public health data and data systems.
Ed: It was an interesting conversation earlier in this podcast with Janet Hamilton about many of the data challenges that public officials and policy makers have been faced with. I thought it was a good idea to check in about what state legislatures are doing around these issues and I wonder if you might be able to tell us a little bit about how state legislatures are addressing this.
SK: State legislatures have taken action to assure that data is coming into their state public health departments. That data comes from many various sources and it needs to be aggregated and analyzed for decision making purposes. Some states such as Texas and New York have passed legislation to assure that data regarding vaccines is going into state immunization information systems. This is especially important as the scope of providers who can administer immunizations has expanded in many states over the last several years. It became clear during the pandemic that public health departments both state and local need data from hospitals such as discharge data in order to have a more clear picture of the level of Covid 19 disease in the state. Some state legislatures like Alabama and Connecticut have passed bills to ensure that hospitals are submitting data to their public health departments. And also that public health departments have the capacity to receive and utilize data from hospitals.
A few states such as Texas and Kentucky have taken action to standardize or streamline the way that public health departments receive data from laboratories. There was more data coming from labs to public health departments than ever during the pandemic. And it’s important that this data is complete and it can be transferred efficiently if states are going to have the information they need to make decisions.
Ed: You know I think I did a couple of dozen podcasts specifically about COVID-19 and one of the things that came up repeatedly was the notion that public health departments were not funded or did not have the resources that they thought they needed in the middle of the crisis. And I wonder if legislatures are looking at putting more resources generally into public health?
SK: The pandemic did shine a light on data gaps and older technology in public health systems at the national, state and local levels. There is a saying that we go to battle with the weapons that we have in place and I think that can be true for fighting diseases as well. Just like any other industry, our public health departments need modernized data systems if states want timely and accurate information. In response to that need, some states have utilized their American Rescue Plan Act or ARPA funds to jumpstart investments in their public health data systems.
States like Virginia, Nevada and Washington have made investments in their public health infrastructure including data systems with the intention of ensuring that they have the data they need to make policy decisions.
Ed: We like to do lessons learned on this podcast in a whole bunch of different areas. And I’m wondering as you’ve talked to public health officials are there some key lessons learned particularly around data collection analysis that legislators should be aware of and maybe they are not?
SK: I think public health officials as well as other officials have learned the importance of clear data driven information and messaging. It’s important to be clear about what we know as well as what we don’t know at any given time especially during the course of a pandemic or an epidemic. It is possible that there could have been times during the COVID-19 pandemic that public health officials could have known more or had more information to share quickly if they had the right data at the right time. Public health officials and policymakers have expressed the need for timely, accurate and comprehensive data during public health emergency as well as outside of emergencies to detect new disease trends or public health threats down the road.
Ed: Well Shannon thank you so much for giving us this legislative perspective. Take care.
SK: Great. Thank you Ed. It’s been a pleasure.
Ed: And that concludes this episode of our podcast. We encourage you to review and rate NCSL podcasts on Apple podcasts, Google Play, Pocket Casts, Stitcher or Spotify. We also encourage you to check out our other podcasts: “Legislatures: The Inside Storey”and the special series “Building Democracy.” Thanks for listening.