Modernizing State Public Health Data Policies and Practices

[ANNIE FINE]

Public health is not that visible.  We prevent illness.  We prevent bad outcomes.  So you're not going to see the splashy outcomes.  You're going to have a healthy person who didn't get sick because they got a vaccine or they weren't exposed to an illness or they didn't eat a contaminated food product.  So those are the kinds of things that happen as a result of public health, but when they don't happen is when you see the problem.

[J.B. WOGAN]

I'm J.B. Wogan from Mathematica, and welcome back to the On the Evidence.  On this episode, we're going to talk about public health data and, in particular, state policies and practices that affect the way public health information gets collected and used to improve the well-being of communities. 

In the same way that a doctor uses data to diagnose and treat a patient, public health agencies use data to measure and address health needs in a community.  With more data and better quality data, state public health departments can detect emerging health threats more quickly; perform investigations to understand what is causing a health threat or why certain groups are at higher risk; more effectively prevent health problems and limit the spread of infections; increase access to individual services and care needed to be healthy; and most importantly, with more data and better quality data, state public health departments can save lives.

The impetus for this episode is a new report from the Pew Charitable Trusts that provides a first-of-its-kind analysis of public health data reporting and exchange policies and practices across all 50 states and the District of Columbia.  The analysis comes at a time when technology is changing the way that public health information flows to state public health agencies.

By way of background, state governments have rules, regulations, and laws that require health care providers to report certain conditions or information so that public health departments can detect public health threats in their communities.  In the past, providers shared those data manually; but now there are opportunities to share the same information electronically and even automatically without extra effort from the provider or lab. 

The Pew report highlights the wide variation in data sharing policies and practices across states, not only from state to state but also by data stream and provider type.  It shows, for example, that automated electronic reporting is much more commonplace among labs reporting positive test results for an infection than for a doctor's office reporting the case of a patient with concerning symptoms.  For case reporting, efforts are underway to pull electronic reports from electronic health records; but that remains less common.  The information is often reported by fax machine or by phone, and that sort of variation is important because public health officials interviewed for this research said they tend to rely on the automated electronic data source -- that is, labs -- as their primary source of information about emerging diseases even though case reports of clinical information about patients would provide a fuller picture about the community's health.

Problems with public health data became a national talking point early in the COVID-19 pandemic when many states struggled to get information about new infections fast enough to make contact tracing and case investigation effective in containing outbreaks.  But the report's relevance extends well beyond COVID-19 and has implications for any number of threats to a community's health, both every day and during emergencies from the seasonal flu to lead exposure.

Our guests for this episode are Lilly Kan, Annie Fine, Mary Beth Kurilo, and Monica Huang.  Lilly leads Pew's work on enabling the rapid and effective use of health data to advance Americans' well-being.  Annie is the Chief Science and Surveillance Officer at the Council of State and Territorial Epidemiologists, where she also acts as a Senior Advisor for data modernization.  Mary Beth is the Senior Director of Health Informatics at the American Immunization Registry Association, also known as AIRA.  Lastly, Monica is a Senior Researcher at Mathematica, where she focuses on the implementation of health policy through data systems and analytics.  She was part of the team at Mathematica that supported Pew's work through data collection and analysis.

Welcome, Lilly, Annie, Mary Beth, and Monica.

Annie, I'd like to start with you.  The report focuses on four types of public health data streams, and some are more self-explanatory than others.  But I was hoping you could talk about the first three -- case reporting, lab reporting, and syndromic surveillance.  What do we mean when we say "case," "lab," and "syndromic" data; and why do they matter for informing public health officials and protecting the health of people and communities?

[ANNIE FINE]

Well, first of all, thank you so much, J.B.  I just do want to say what a pleasure it is to be with you and with the other folks on this call to be able to discuss and talk about how public health gets information that it needs to be able to do its job and protect the public health.  This is such an important topic, and I'm really thrilled to be here to talk about it with you.

So let's start with "case."  What is case reporting?

Basically, public health is in the business of preventing illness and preventing bad outcomes from illnesses or injuries or other conditions.  This is of course different from clinical medicine, whose job it is to treat people who have illnesses.  So in order for us to do our job, we really need to know what is going on.  So I'll give you an example.

Let's just take an illness like measles.  We've had measles cases recently in this country.  They affect children, they can be quite dangerous, and they are very contagious.  It's really easy for somebody to spread measles from one person to another.  So in order for public health to respond to even a single case of measles but especially if there's multiple cases, like an outbreak of measles, we need to know that it's happening.  It's not like -- the information doesn't just grow on trees.  So the way that we find out is that people who are seeing patients in health care settings -- whether it's an outpatient clinic, a doctor, or a hospital -- they report to public health when a person shows up with a set of particular diseases, which includes measles.  These are called "reportable" diseases or reportable conditions.

So let's just say somebody has measles.  They go to a doctor.  The doctor has to report that case.  In the past, that report has been done by a manual process which is either filling out a form/a card, sending it in or, more recently, faxing it in and sometimes even calling it in.  But that's the old way of doing things, and we're trying to modernize how we do things so information flows faster and is more automated and requires less time. 

So now we have something really cool, which is called "electronic case reporting," which when a provider is seeing a patient and they're working in their electronic health record and they enter the information like they normally would, they don't even have to take time away from the patient. The electronic health record system can automatically detect what the possible diagnosis is and send a report to the health department.  That is called electronic case reporting, and it's so important and it's a newish thing.  We've been scaling it up over the last few years.  So that's what case reporting is; it's that reporting of a case of possible illness that public health needs to know about to public health.  Then oftentimes, public health has to investigate it to find out if it actually is a case and to take the actions that we need to take.  So that's case reporting.

Next one is laboratory reporting.  Laboratory reporting is when a laboratory does a test and finds a positive result for one of these reportable diseases.  So an example for that could be tuberculosis.  It could be salmonella, like the food-borne illness.  It could be hepatitis, or it could be COVID.  Like we just had a giant pandemic, and during that pandemic the main way that public health found out about those cases was through laboratory reports.  This is also automated; and now when there's a positive result for a particular disease, that report can go automatically to a health department.  But that report doesn't contain a lot of the clinical information or other information that we really need to do our job, so we often have to supplement that with getting additional information.

Then the last one is syndromic surveillance.  Syndromic surveillance is different.  It's basically the reporting of a whole bunch of information not about specific individuals with names but about people who are seeking care, for example, in an emergency department.  So let's just say a lot of people come in and they say, "I have a cough."  Or a lot of people come in and they say, "I hurt my foot," or whatever it is.  That information, that chief complaint, what they're complaining about, gets sent to health departments; and they can follow trends and see what might be going on that might be unusual.  They can also see the age of the people.  They can see where they live.  They can know which hospital is seeing these kinds of people in their care settings. 

So that's what syndromic surveillance is.  It's less specific.  Sometimes it does have diagnoses, so we're able to actually see the diagnoses; and this is a great source of information because it's almost in real time.  Those people that are seen in emergency departments, the information can be sent that same day to health departments.  So we really have a good pulse on what is going on situationally in the jurisdictions that we are responsible for.

[J.B. WOGAN]

Okay, and you mentioned -- you said, "chief complaints."  These are symptoms.  You might not know exactly what it is, but there's like a cluster or a pattern of symptoms; and that might be suggestive of something that's emerging in the community.

[ANNIE FINE]

Exactly, so when you go to the emergency department and you show up and you speak to the triage nurse, you say something like, "I have a headache and I have a cough," or "I have a really terrible sore throat," or "I broke my leg."  Those are what's called symptoms or chief complaints that is the reason you went to the emergency department in the first place, and those can be tracked over time.

[J.B. WOGAN]

Okay, that's perfect.  I think syndromic data, at least for me as the non-public health expert, that was the one that I didn't intuit from just initially reading the report.  So that gives us case, lab, and syndromic data.

Mary Beth, I want to turn to you now.  I imagine listeners will be more familiar with the fourth data stream, which is humanizations.  But most of us only know that we get shots occasionally, not so much how information about vaccines flows to public health agencies to inform action.  So could you talk a little about the data part of immunization data?

[MARY BETH KURILO]

Absolutely, and thanks so much for the opportunity to talk about the flow of immunization data.  This is obviously a real area of passion for me.

So if you think about where immunizations are given, they happen in lots of different locations, right?  Maybe in a provider office, maybe in a pharmacy, maybe in a local health department, maybe if you're living in an underserved area, you have a mobile van that comes in to provide immunizations for kids or adults.  In every state and some cities, there's an immunization information system; and the job of an immunization information system is to consolidate an individual's immunization record over the full life span. So whether you get that shot in a pediatric practice or later on at your local pharmacy, we want to match those shots so every individual within a given jurisdiction has a consolidated record.

And if you think about for you how many places you've likely got shots over your lifespan, that's a pretty big goal and a pretty great opportunity -- right? -- to have one place to go to access an immunization record.  So that's an IIS goal.  And this information can be available to you as a consumer. It can also be available to public health to look at coverage rates, how well a population is covered and protected from a disease; to look at pockets of need, who is being underserved within a given area; and certainly to respond to outbreaks.  I think Annie mentioned a measles outbreak, so you'd want to be able to look at that community or that school to know how well that population is covered -- is well-vaccinated and protected from measles.  So all of those are really important things, and those are all the ways that this data and information serves public health on the local, state, and federal level. 

But that only really tells half the picture.  The other really important half of the picture is getting that data back out for use.  So that data is also made available to providers to access at the point of care so they can get that consolidated record and that forecast of what their patient may be due for that day.  Maybe it's an adult who's coming in for a flu vaccine, and they also need a pneumococcal shot or a zoster shot.  It's available for health payers to ensure that their members are up-to-date.  It's available for schools and child care providers to make sure their populations are protected.  Then most importantly, it's available for consumers both on an individual basis and for parents who need to make sure that their kids are well-immunized.

So when these connections are created between a pharmacy and public health or a clinic and public health, we really strive to make all of these connections bidirectional.  So not only does that data feed in from an electronic health record, but that provider can also easily query that information and get back that consolidated record to make better decisions clinically with the patient that's standing in front of them.  So that bidirectional piece and that flow of data both directions is really critical so that this rich information gets used to protect the whole population out there.

[J.B. WOGAN]

Does it have any value as a tool for evaluating how vaccines are reducing the spread of a disease?  Like I'm thinking about with COVID-19, there was a lot of conversation around the vaccination rate and how that might have a relationship with the severity of disease or the spread of disease.  But is that another aspect, another reason, to follow this data?

[MARY BETH KURILO]

Absolutely, so within public health, the different programs within public health work very closely.  So immunization may be responsible for gathering all of that information on who has been vaccinated and what the coverage rate is in that jurisdiction, but they're working very closely with their epidemiologists in communicable disease to mine that data and look at that immunization data and the level of protection across the community and compare that to cases within that area and really make that linkage to how well a population is immunized compared to how many cases there may be in that area or jurisdiction.  So that really paints the full picture for public health in how to keep their population safe and healthy.

[J.B. WOGAN]

Mm-hm, okay.

Lilly, I want to turn to you now.  As I mentioned in my intro, this is the first analysis of its kind which is pretty cool.  Why was it important to the Pew Charitable Trusts to learn more about the state policies and practices that govern the flow of public health information today?

[LILLY KAN]

Thanks for the question, J.B. 

I think we've all recognized how important data is, especially over the past few years.  As you, Annie, and Mary Beth have all touched up, data enables public health agencies to do everything from spotting emerging threats, tracking how and where they spread, to determining which communities and populations need the most support, to informing interventions and assessing how effective they are.  Without data, this can't happen; and that's the case whether you're talking about a new novel emerging organism or diseases that keep emerging at various points in time, like the measles example that Annie and Mary Beth just touched upon.

At Pew, we've seen the tremendous amount of work public health agencies have been doing to improve how they receive data from health care providers and others that report data.  As the practice of reporting public health data has continued to move away from manual to electronic ways of reporting, and increasingly automated electronic reporting, it was also an opportunity to look at state policies and see how they align with current reporting practices.  That's because states determine who must report data, when they must report it, how they must report it, and what details they must report; so for example, race and ethnicity information.

And both policies and practices affect the flow of data from providers to public health, so it's important to understand how states govern public health data reporting from both aspects.

[J.B. WOGAN]

Lilly, one thing I did want to ask about.  I think an earlier question was about how this kind of data could be useful to public health officials, but I don't want to neglect the fact that especially as we're all coming out of the COVID-19 pandemic that this kind of information may be of interest to people who don't work in public health.  Can you speak to that for a second?  What's the value for just your general citizen, your general member of the public?

[LILLY KAN]

Yeah, J.B., that's such a great question. 

When I think about the early 2020 time period where we were just starting to learn about what COVID was, how it was impacting communities and us, I think about all of the times that I looked to a COVID data dashboard sometime when data became available; and I ask our listeners to think about the points and times when they were looking at a COVID data dashboard to really understand what the spread and impact of COVID was on their community. 

That information that was available through those COVID data dashboards is the same data that public health agencies need and what they use to make those data dashboards available, and to make that happen really does take a village.  It requires people who are seeking care in a health care setting to not only seek care but provide information about their symptoms and their experiences.  It requires health care providers to make sure that information gets to the public health agencies in the way in which they were required to report, and it also requires public health agencies to both receive that information, process that information as quickly as possible so that they can get the information back out to all of us who need it in different ways.

[J.B. WOGAN]

Annie, were you raising your hand?

[ANNIE FINE]

Yes, I really agree with what Lilly just said; and I also want to say that the information that public health receives also helps us to identify inequities in how these kinds of threats are affecting people in our communities.  It's so important.  For example with COVID, we did not really realize that it was affecting and impacting communities of color the most at the beginning of the pandemic.  So when we found that out, we could then address the issues within those communities to help those communities become more resilient and finally to protect themselves from this threat; and that's really critical.  If we don't get this kind of information, we don't -- we cannot show those kinds of real profound disparities and differences in how different communities are affected by the kinds of threats we see.

And I want to say, this is not just about infectious diseases either.  We are now using these processes to understand things like chronic diseases better, to understand things like occupational threats.  During COVID, we found out that home health aides were at particular risk for COVID.  That's the kind of information about occupation and risk that's really amenable to somebody doing better education, better prevention, measures that people can take to protect themselves within the workplace.  So that's the kind of thing that the communities really need, information that we really need to provide to communities so they can protect themselves from these kinds of threats -- also things like silicosis, birth defects.  These are all things that are now getting reported through these same means and then linking people to care early. 

Those are -- there are just really a huge range of different kinds of problems that can be solved by this kind of data and for people to have better access to information about what they can do to keep themselves healthy.

[MARY BETH KURILO]

You know, Annie, one thing you mentioned makes me think about the placement of different COVID vaccination sites and COVID testing sites.  It makes me think about mobile locations that provide dental screenings and other health services and how data has been so important for informing where to place those sites so that communities can access it most easily.

[ANNIE FINE]

One hundred percent -- when I worked in the New York City's Department of Health, we used data on a daily basis to target where the mobile testing vans and the vaccination clinics were set up in areas where we had the most transmission of disease and the lowest levels of vaccination.  All of that information was used on a daily basis.

[MARY BETH KURILO]

Well, and just to tack on to what Annie mentioned, I think it's really important to recognize when we're thinking about how we can use these data to inform health equity decisions that we really think about the shared responsibility for gathering that data.  I know there was a lot of conversation during COVID, and a lot of people looked to public health to get good data on race and ethnicity and who was being affected by COVID as a disease and who was being vaccinated.  Public health didn't always have that race and ethnicity data, and public health retooled to ensure that they could gather it as cleanly and completely as possible. 

But some of those requests for race and ethnicity data needed to go upstream to the pharmacists who were vaccinating, and to the providers who were vaccinating in clinics, and to health departments who were seeing patients at the point of care to ensure that those data were being gathered completely and accurately.  So I think as someone said earlier, it really takes a village; and it's a shared responsibility to ensure that the data is complete and accurate as possible so that we can use it to answer those important health equity questions and really close those health disparities.

[J.B. WOGAN]

Annie and Mary Beth, I have a question for both of you.  Does this research fill a specific knowledge gap for your members?  What are some of the likely ways that you think they might use this information in this new, novel report in their own work?

[ANNIE FINE]

Yeah, thanks so much for that question.

You know, we have a very unique, I would say, structure for how we do public health in this country; and the way we do it is that public health is really grounded at the state and local level.  Each state, and even each locality in some places, can do their work whatever way they see fit.  They can do their work.  They have the ability to write their own laws, regulations, policies, and to practice in the way that they determine because we have what's called a "federated system," where each state or locality has autonomy to do public health and the responsibility to take care of the people within their jurisdiction.

But we don't want to all do things differently.  We really need to knit this system together to make it work for the country as a whole.  That doesn't mean that the Federal Government needs to control everything.  But my organization, the Council of State and Territorial Epidemiologists, part of what we do is to help states and local jurisdictions and tribes and territories use common definitions, use common ways of exchanging data, use common policies, and encourage them to work together to make sure that we can talk to each other -- that one state's data will be comparable to another state's data -- and that we can all provide data that's needed at the national level as well.  So that's really important, and a lot of the policies and practices that we're talking about in this report are what enable that kind of knitting together of the information to happen.

So each state is going to be very interested to see what other states are doing and what the best practices are and where we are as a whole.  This report will be used for them to understand that better and to try to move together so that we're doing things in a harmonious way.  So that's probably one of the most important things that I think this report will offer for our members, and I'd be interested to hear what Mary Beth thinks too.

[MARY BETH KURILO]

Yeah, I think you said that perfectly, Annie.  I'll just add that I love your concept of knitting this information together and knitting our programs together.  We think of the network of IIS programs as a nationwide network of systems, and we strive even within our federative public health system to operate in a standardized, uniform way; and we have a lot of tools for that.  We have our HL7 Implementation Guide that governs what messages should look like as they're sent across the wire.  So we have a lot of tools to work in a uniform way, and yet we can't forget that public health is governed by state and local law and policy.

So I think it really helps to have visibility and transparency into what those policies are so that jurisdictions can know what's happening across their peer network and that we can all have visibility into how those policies may affect our practice.  None of this happens in a vacuum, and we always need to consider the broader impacts not just across public health but in immunizations alone we have 140,000 active interfaces with provider offices, pharmacies, health plans.  So they need to understand what those public health policies are within the jurisdiction they're working to keep in mind how that will affect data and data flow.

So as we know, not only is it important to know what those policies are today but these policies are always evolving.  So this study gives us a great snapshot of what it looks like today; and we always need to keep a pulse on what are the trends, what's changing, so that we can react to that and know how that affects the data that we're able to share both on the public health side and with private clinical health care.

[ANNIE FINE]

Can I add something to that?

[J.B. WOGAN]

Yes, I just want to ask one clarifying question, Mary Beth, about an acronym that I've heard you mention twice -- "IES," is that what you're saying?

[MARY BETH KURILO]

Oh sorry, yes -- IIS, Immunization Information System.

[J.B. WOGAN]

Okay, great, just for listeners who might not be familiar.

[MARY BETH KURILO]

Thanks for clarifying.

[J.B. WOGAN]

And do they need to know what HL7 -- what that is?  Does it matter?

[MARY BETH KURILO]

So HL7 is our Health Level 7; and that's our standardized messaging that we use to send messages between EHRs and IIS or Immunization Information System.  So thanks for catching me on the acronyms, J.B.

[J.B. WOGAN]

Okay, perfect.

And then, Annie, sorry, I didn't mean to -- please, add to what Mary Beth has said.

[ANNIE FINE]

Sure, I just also wanted to emphasize that with our need to share information, as Mary Beth was talking about, back and forth with health care, health care serves people from all jurisdictions.  There are some hospitals and health care networks now that serve people from multiple states, even all the states, and certainly lots of people who come from various areas that might have different jurisdictions.  So if those jurisdictions all have different policies and practices, it makes it very challenging for health care. 

So that's another reason that we all need to work as a team, and these kinds of networks that Mary Beth was talking about are really critical.  We are building systems that are kind of like a hostel system with certain kinds of hubs where a health care facility or a doctor can send their information to a hub that can kind of process and manage that information and send it where it needs to go, which is much, much easier for a health care organization to do than to deal with all these different policies.  So it's just important that we are understanding the landscape, and this report helps us do that and helps us point the way to how to solve some of these problems where they have differences across the different jurisdictions.

[J.B. WOGAN]

All right, perfect.

Monica, I want to turn to you.

We heard from Lilly why it was important to conduct this research.  Let's talk about how you conducted it, how it was conducted.  What were your data sources on public health data policies and practices?

[MONICA HUANG]

Sure, thanks, J.B.

We started with what was publicly available, so what is already out there in state laws, on health department websites, in the literature.  We also looked at some surveys and assessments that have been done in the past.  As you mentioned, this is kind of the first analysis that's like this.  So there wasn't anything that fully answered all of our questions; but there were pieces out there, and we were able to kind of fit them in with what we found.

All of that best research was really most helpful for things like policy and what kinds of things health departments require when it comes to public health reporting.  What you don't get is a lot of the nuance and flavor for how this plays out in real life because it's not typically the kind of thing that gets written down and publicly posted.  So for that, we actually had to go talk to people.

So we interviewed people who work on public health surveillance for their state -- so eCR, ELR, syndromic surveillance.  We also talked to IAS managers and program folks.  We also talked to legal and policy staff -- so public health attorneys, people who knew the policy side as well.  We asked them about their experiences with public health reporting, how this actually works in their state, and how that policy and practice relate to each other.

[J.B. WOGAN]

Okay, perfect.

Lilly, I want to turn back to you now.  I've alluded to the reports focused on state policies and practices.  In terms of state policies, let's start there.  What would you highlight as some of the interesting and important takeaways on the policy side of things?

[LILLY KAN]

Well, I would say that because of how policies and practices go hand to hand, the takeaways from our report really spanned both policies and practices and really fell under three things that came to mind.  One is that when we're talking about something like electronic case reporting, or eCR as we call it for short, that there is a ripe opportunity for that to improve and scale.  There is a lot of progress happening on the practice side, and also eventually it will give us the opportunities to explore how policies can sustain that progress.  All of that work together needs to continue happening.  Lab reporting, immunization reporting, and the rapid adoption of eCR for COVID-19 shows that it can. 

Before diving even deeper, I think it's important for our listeners to recognize that shortly before the pandemic started eCR was only happening in a handful of states that were piloting it; and that was a big advancement for public health at the time.  It was really incredible to see how health care reporters and public health officials slowed up eCR for COVID from there, and that was the result of a mix of also practice and policies at largely the federal level and also that were implemented at the state level to make that a reality.

Despite all of that progress, we know there's still a lot of work to be done to expand and use eCR.  Since eCR is much newer, it's understandable why case reporting has historically been more outdated than, say, lab or immunization reporting and still catching up to the use of fax and phone.  That current use of fax and phone has also been largely driven by current policies that call out fax and phone as methods of reporting, although we also see many examples of how state policies also acknowledge electronic reporting as a method of reporting that healthcare providers can take.

There's a clear and promising path forward for improvement, especially when we look at the progress that has happened over decades for electronic lab and immunization reporting.  So during our interviews, officials from a majority of the states we interviewed said that more than 90% of the lab data they receive is via electronic lab reports.  For immunizations, officials in almost every state shared that they most often received electronic reports.  It's been proven that providers and public health agencies can adopt eCR.  So this progress illustrates that eCR can become much more useful and more widely used, and that grows from where we were not too long ago with just starting to put this into practice.  That really built from existing policies that continued to be in place that specified the types of methods by which providers can send public health data.

Two, we learned that state policies don't always reflect the diversity of current and potential reporters; and as a result, many states may be missing data, particularly for syndromic surveillance and even immunization data from health care settings and the populations they serve. So for example, urgent care centers we know are a growing alternative to emergency departments for where people seek care; but only a few states require urgent care centers to participate in syndromic surveillance. 

For states with immunization reporting requirements, those requirements may be specific for reporting childhood vaccinations specifically.  I think those findings highlight how practices have an important impact on proving public health data reporting that currently happens and potential opportunities for policies to sustain those gains.

Three, on the policy front, public health officials also want to ensure that policies and requirements don't leave out providers that can't afford electronic record health systems that enable electronic reporting.  We heard from state officials that said it's cost prohibitive for many providers to use their systems for automatic electronic public health data reporting.  Some providers lack adequate Internet access to report data electronically, and this can really impact underserved communities and populations hardest since they tend to receive care from under resourced providers.  What this illustrates is that any efforts to improve public health reporting policies and practices should always consider the unintended consequences that could negatively impact under resourced providers and the populations they serve.

[J.B. WOGAN]

So Lilly just talked to us about the policy side of things.  Of course, Monica, there's always a difference between policy and practice.  When Mathematica interviewed almost 250 public health officials, what stood out to you in terms of the actual practice of reporting public health data?

[MONICA HUANG]

I think when it comes to how this work is really done, what we found is it's a lot messier and a lot more work than you might think looking at it from the outside.  I think we are so used to doing things electronically.  We email, we text, we order stuff online.  You send money from your phones to your friends to split a check for dinner.  As a user, that all happens pretty easily.  So you might expect of course public health sends data electronically, of course people can just push a button and send information.  But there's a lot going on behind the scenes to make sure that that infrastructure is in place for that to happen, that the data is secure, that it's standardized, that's it's actually usable for some kind of action.

So when you see in policy that, yes, it's an option for doctors and labs to report information electronically to labs and health, the reality is there's a lot tied up in that -- just in that one word, "electronic," and what that really means.

We also heard a lot about the importance of partnerships.  So, yes, reporting may be required by law; and for case and lab reporting, that's definitely the case.  A lot of states also have penalties and levers that they can use to enforce those laws.  But when we talked to people, no one could really remember any examples of someone actually using those levers.  People use this metaphor of the carrot and the stick when they talk about how to get other people to do things; and the people we interviewed would say, "I don't really have a stick."  It's not about using the sort of punishment to get people to comply.  It's about building relationships; it's about educating providers, getting them to work with you so they can send better data for the good of public health.

Somewhat related to that, another theme we heard is that there's this tension between setting requirements and being really strict about how you receive data but as standardized and as clean as possible versus the worry that if you're too strict and you make it too hard, you won't get any reports at all -- is one of the potential unintended consequences that Lilly sort of referred to earlier.  What we've heard is that ultimately public health wants that information however they can get it because their mission is to find out about health issues and do something about it.  They don't want to miss a case of measles, for example, just because a provider can't figure out how to send a report in exactly the right way.

So there isn't necessarily a desire to just come down really hard on requirements to get clean data; but there's a balance there, and different states handle that in different ways.

[J.B. WOGAN]

Those are all great takeaways. 

I'd like to wrap up by talking about what happens next.  Mary Beth, I'll start with you.  Where are you seeing communities focus their energy around improving the amount, quality, and/or timeliness of immunization data; and where are you already seeing signs of progress in those areas?

[MARY BETH KURILO]

Yeah, thank you for asking this really important question. 

Just looking back over the last several years, COVID was really a game changer for growth and expansion of all data capture but especially adult data capture in IIS or Immunization Information Systems.  I think it really gave us a view into what's possible when we emphasize the importance of gathering and securely sharing health data.  I think this really gets at that quality piece that you were mentioning, that completeness of data.

We saw adult data capture jump from about 60% of adults with one or more adult vaccines in the IIS in 2020 to about 94% in 2022.  So you can see how that policy for reporting of COVID vaccine to IIS made a huge difference.  So I think in terms of looking at what we can learn from COVID and where we go from here and where we're seeing improvements, I think there are really three key steps to increase immunization data quality.

One is to continue to support the technical infrastructure to collect, consolidate, and securely share immunization data.  When you think about immunization information systems, they're tasked with a lot of the same functions as EHRs -- identity management, timely data collection, secure servers.  Yet, they don't have the deep pockets and sustained funding like some of our EHR partners do.  So we need to think about how we sustainably fund and support these systems so that they can be available for routine data capture, but certainly so they have the capacity to scale up in response to an emergency; and then we can really leverage that data to ensure that our populations are safe.

All of this really takes not just resources but sustained resources so that they can plan-fully and thoughtfully expand to build their public health mission and continue to serve all users of this important data. 

Then, to pick up on the standards piece that a few folks mentioned, we really need to zero in heavily on standards and standard alignment.  So, yes, we have the Federated Public Health System, but we do so much that's similar from jurisdiction to jurisdiction.  So how can we gain efficiencies?  How can we look at shared services across jurisdictions, open-source approaches, modular approaches to the work we're doing, which will help ensure that an immunization forecast you receive in Maryland is the same one you might receive in D.C.?

So one effort that we have that's really helping with this is AIRA's Measurement and Improvement initiative, where we're actually looking at systems and testing them for alignment of these standards so that we can both share resources across jurisdictions and ensure that we've got consistency jurisdiction to jurisdiction.  And we are already seeing how much this is really improving the quality of data in terms of timeliness, completeness, and accuracy across the country.  So that's really exciting, and we've been able to close some of those performance gaps across our jurisdictions. 

So I think we're seeing great progress in this area to improve quality, and we want to continue to support this work so that we can continue to improve as we go forward.

Then finally, I think there's a real connection between data quality and data use.  So the more we can get the data back out to end users -- whether those are providers, schools, health payers, or consumers -- the better the data gets.  We can see some of the data quality issues; but once those data go back out to a provider office and they're looking at their patient populations, they can see things through a whole different lens.  So I think continuing to support the data in our systems being used -- not just by public health but by the whole health care ecosystem -- we'll see that data improve because we'll find the gaps, we'll find the challenges, and be able to close those gaps together.

[J.B. WOGAN]

Annie, let me ask you a similar question.  For all the public health data streams we've been talking about today, where do you see communities focusing their energies around improvement; and again, where are you already seeing some signs of progress?

[ANNIE FINE]

Yeah, well, I will say that the COVID pandemic was a real wakeup call; but that doesn't mean that people didn't realize ahead of time that there were issues with how public health was treating information.  So there was an initiative called the Data Elemental for Health, an initiative which started in 2019 before the pandemic, to try to raise funds to support the development of better ways, more modern ways for public health to receive data, share data, process data, and get it out to where it needed to go for decision-making or action.  That was successful; there was some funding.  But the pandemic really made everybody realize how important this was, and now there's been a lot of additional funding for data modernization.

I will say there has been a tremendous amount of progress.  Some of that progress has been with establishing this electronic case reporting, for example, also accelerating the lab reporting and the syndromic surveillance.  So all of that is getting better, but we still have a long way to go.  For example, electronic case reporting is so important because from a lab report you're not going to get things like race --  a person's race, a person's ethnicity.  You're not going to know which populations are most affected by some of these threats like we saw with COVID.  We didn't have that information because labs don't have that information generally speaking.  So you get that kind of information from an electronic case report if it's in an electronic health record. 

Same thing with things like pregnancy.  That's such an important piece of information for somebody who might have Hepatitis B, and their baby may need to be treated for possible perinatal Hepatitis B and lots of other examples like that. 

So now we have electronic case reporting primarily for COVID.  We have it for COVID and Mpox, but we need to expand it.  We need to do it for all conditions, and health departments need to be able to make sure they can automatically take it in.  It's complicated data.  They need systems to do it, and they need people to do it.  So these are the places that we're focusing now -- is really on making sure that data can be efficiently received, processed, and used for public health action and for getting information, like Mary Beth was saying, back to the health care system too.

I just want to say what a success electronic case reporting is.  We have more than 32,000 health care facilities reporting cases electronically.  All 50 states can receive it.  This is even since the time of this report we've had a lot of progress, and another 13 local jurisdictions, and we have over 24.5 million case reports that have been sent electronically.  So each one of those represents a report that did not have to be sent manually.  Somebody did not have to pick up the phone.  Somebody did not have to send a fax.  That is major progress that is happening, but we do still have a lot of work to do to use that information.

And then the other thing is that this work doesn't happen in a day.  So we really need to continue to support and fund this work.  We need to train the workforce, make sure we have capable workforce.  Public health is not a well-funded activity, and there's no process.  We are dependent on public funding for what we do, and most health departments operate on a pretty slim workforce.  So it's really critical.  Public health is not that visible.  We prevent illness.  We prevent bad outcomes.  So you're not going to see the flashy outcomes.  You're going to have a healthy person who didn't get sick because they got a vaccine or they weren't exposed to an illness or they didn't eat a contaminated food product.

So those are the kinds of things that happen as a result of public health, but when they don't happen is when you see the problem.  So I think this is just a really important thing -- is to recognize how important public health is.  It's kind of like having a fire department/police department.  It's a fundamental service that we provide to the public in our jurisdictions that protects them from these kinds of health risks.  We need to continue to support it, and we need to make it easier for the people who are trying to do that so that they can do it more efficiently.

[J.B. WOGAN]

Yeah, I have seen Dr. Leana Wen speak a few times.  She used to be the Public Health Commissioner in Baltimore City; and she has this line, "Public health saved your life today; you just didn't know it."  I love that line, and it is an interesting point about how do you demonstrate the positive impact on people's lives of preventative measures that come from public health.

So, Monica, I want to turn to you.  The report includes helpful action items as it dives into the state of play with each data stream.  I was hoping -- this is a tough task, but I was hoping you could pick one and unpack the recommendation.

[MONICA HUANG]

Sure, so one of the steps the report talks about is for a state to take an inventory of what their data reporting policies and practices look like, and to look at where they are actually helpful and where they might be able to be improved and using that information to help drive change. 

So we've seen in our research that policies aren't everything.  They're not going to solve all your problems with reporting; but they are something, right?  They can be helpful in certain situations to help encourage reporting, to help convince providers or facilities to work with public health when they didn't initially want to. 

Mary Beth and Annie both mentioned COVID as being a turning point for public health departments in terms of their surveillance systems and IAS; and that can be true for their policy as well, just given the experience of the pandemic and the challenges that states were able to overcome in terms of reporting.  Of course there's all kinds of things that are going on in the state policy landscape these days and reasons why states may or may not want to change their laws right now, but we think it's at least worth taking a look; and our report can be helpful for seeing where other states are and to help think through how states might be able to improve how policy aligns with the practice that they want to see.

[J.B. WOGAN]

All right, Lilly, you have the last word.  From your perspective, where do we go from here?  We have a lot of new information about state public health data policies and practices.  Who do you hope to reach with the report's findings, and what would indicate to you that the report was having the impact you'd hoped for?

[LILLY KAN]

So in looking ahead, a few things come to mind that really inform my hopes and dreams.  First, I think we need to recognize that there's no one-size-fits-all solution; but that doesn't mean there need to be 50-plus different solutions.  It just means that the solutions we identify and discuss and work on together across many different partners needs to reflect where states are because they have distinct needs and capabilities.  Our goal with this report really has been to give federal and state officials and policymakers more insights into the complexity and variety of policies and practices that shape how public health data is reported and the extent to which it's used.

Annie talked earlier about the importance of knitting together different approaches that reflect different jurisdictions' needs, and I could not emphasize that more.  It's so important to really have that understanding of the richness of how different states and jurisdictions approach these really big challenges.

Second, I want to emphasize something that Monica mentioned just a minute ago; and that's really underscoring how states have the opportunity to assess their baseline reporting capabilities and policies together.  They need that baseline information to know where they stand, to know where they need to improve, and then to see if their efforts to improve are working.  There's a lot of work that's already happening among states to assess the current capacities as part of the efforts they're undertaking to modernize their data systems.  My hope is that this report inspires those officials to conduct those assessments hand in hand with the review of their own policies and then comprehensively consider what actions they need to take to most effectively improve electronic reporting.

Third, the Federal Government and public health agencies should continue closely collaborating on the national standard setting and policymaking efforts.  I know Mary Beth mentioned all of the work that has happened, that needs to continue happening, to standardize our approaches, to standardize technical approaches and also other practice approaches.  There's a lot of federal action happening right now in public health data, and federal agencies need to recognize the diversity of approaches within states.  Federal agencies need to continue engaging them in those efforts so different levels of policies can complement each other to best meet the needs of different states and jurisdictions.

Public health officials also have an immense amount of work on their plate, so I recognize it can be challenging for them to engage in these federal processes; but it's incredibly valuable when they can.  Recognizing that making progress takes a village, I hope that this report reaches people broadly and especially those people who have a role in enable public health agencies to receive the timely and complete data that they need to improve and protect the communities they serve.

If the report has the impact I'm hoping for, then I am really excited to see the future examples of how public health agencies are working together with partners in their states to review, align, build upon policies and practices that improve how they're electronically receiving data.  There's really no better time to take a step forward, even if it's a small one, than right now.

[J.B. WOGAN]

That's perfect.  I think we should end there.

Thank you, Lilly, Monica, Mary Beth, and Annie. 

Thanks to my guests -- Lilly Kan, Annie Fine, Mary Beth, and Monica Huang.  This episode and the report we discussed were made possible with support from the Pew Charitable Trusts.  A link to the report, as well as other resources mentioned in the conversation, can be found in the show notes.

As always, I want to thank you for listening to On the Evidence, the Mathematica podcast.  If you're a fan of the show, please consider leaving us a rating and review wherever you listen to podcasts.  To catch future episodes, subscribe at Mathematica.org/OnTheEvidence.