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The Role of Information/Communication Technology and Monitoring and Surveillance Systems in Bioterrorism Preparedness

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Cindy: Michael, for those people who might be interested in getting additional information on the RODS System, how can they do that?

Dr. Wagner: Okay, well, I think we may be skipping ahead of a slide that shows a map of Utah, but the map basically shows the same kind of data that you saw for the respiratory category on a timeline, as a static picture of one day's activity. So if there was an outbreak confined to one ZIP code in Utah, or a line of ZIP codes in a downwind direction, that would stand out like a sore thumb, as a black streak through this picture. But, there's one other point I want to make about the RODS project. And as well as the National Retail Data Monitor, it's an important one to the audience, many people in the audience. And that's that we recently have open sourced the project. And the motivation, the University of Pittsburgh has put out this code for free under the GNU general public license. Which is the same license under which Linux is released.

And the motivation for doing this is that biosurveillance absolutely requires good software, good software doesn't grow on trees. Biosurveillance also requires a community of highly qualified consultants, installers, IT people to install, customize and maintain the software. And one approach to making that happen, and to speeding up the rate at which this country is protected from these kind of things is to put the source code out there for free. And that's why we did it. Anybody who wants more information about this project, please log into the same Web site that I gave you before. Also you might want to look at the RODS open source project Web site which is located at http://openrods.sourceforge.net/ and there's a companion paper also in the same issue of the Journal of the American Medical Association about the RODS system.

Cindy: And Michael we will be back to you during the Q and A portion. Our first two presenters have shared information on a number of public health surveillance systems and it seems that there are many different systems out there that generate information that can be used to help detect acts of bioterrorism. But, having all these systems generating different types of data can present some real challenges that need to be addressed.

To discuss this issue, let's now turn to Dr. John Loonsk, the Associate Director for Informatics at the Centers for Disease Control and Prevention. John's been heading the CDC's effort to better coordinate the functions, uses and activities associated with the growing number of systems and organizations involved in public health surveillance. John, can you give us an idea of what types of bioterrorism related information systems are out there?

Dr. Loonsk: There certainly are a number of different functional systems that are out there, and in fact many different individual systems inside of each function. The preparedness IT systems principally fall into a few different categories. First there are detection and monitoring systems that support active threat surveillance and the collection of national and other jurisdictional health status indicators. Then there are systems that support the analyses of those data and try to support decisionmakers in terms of decision making process for coming to conclusion about whether there truly is an event and whether that event needs, in fact, further investigation.

Their information resource, and knowledge management systems, one of which was referenced earlier today on this call. And then there are different communications and alerting needs. Some secure communications among public health professionals to foster increased watchfulness in the circumstance of a possible event, and some broader alerting systems that need to reach a very broad audience to indeed, alert of an event that may have occurred, or something that has to be considered by the clinical community as well as public health. Importantly, there are also response systems. And the entire point of early detection is to get to early response. The good work that's been described earlier has principally that as a focus. The next steps in terms of response are indicated on the next slide. When you move beyond the early detection of an event, one needs to think about the issues associated with possible case management associating the different environmental factors with those possible cases, the symptomology of those cases, whether there's a travel history, whether there's a commonplace of exposure, like a plane or a building. That is supporting the active investigation and confirmation. Moving to the conclusion that there is an event going on. Moving to the conclusion of a true case from a possible case.

Frequently this involves lab testing. Whether it be clinical lab testing, public health-based lab testing of human samples, or environmental specimens that are being tested, and the need to associate those test results with those possible cases and threats. The next steps in terms of response move into issues around what the action will be that will help to avert additional cases, whether that be quarantine, whether that be prophylaxis or vaccination. And in fact, many of the studies of information systems support for preparedness point to the fact that the data management needs that occur after early event detection are even more significant than the complex data problem of early identification of an event. The final part of that slide addresses the fact that even in an emergency, there needs to be consideration for things like the successive 'take' in vaccination, and the monitoring of adverse events and different data management needs of follow-up and management.

Cindy: Well, the first of challenges and issues that can arise from having so many of the systems you're mentioning in place. There's a lot it seems.

Dr. Loonsk: Indeed. Many issues. On the next slide we have graphed the different information exchanges that actually, in retrospect, were involved in the anthrax response that took place around the anthrax attacks subsequent to 9/11. And many of these information exchanges were done manually during anthrax. For example, the hundreds of thousands of environmental tests that were done for anthrax in different facilities were almost, without exception, communicated either by a fax or communicated by a telephone with someone calling someone else up and exchanging the positive results and the negative results. But you can see from the complexity of the slide that there are indeed many different organizations involved, that those organizations have different functions in the preparedness activity and the response activity. And that these systems, as we develop them to implement the support for preparedness and response, need to work together and to share data. And they need to adhere the fact to the technical approaches that will allow them to work together. And in fact, complicating this is that many of the different organizations have requirements for information systems that are being developed for a different organization. For this network to work together there really needs to be consideration for the information needs of other organizations and other participants, not just for the organization that is building a particular information system.

Cindy: John, what has the CDC done to address those issues?

Dr. Loonsk: Well, there have been a number of different initiatives that have been involved in trying to advance information technology to support different components of this picture. The national Electronic Disease Surveillance System has been moving to eletronify what is the routine surveillance activities of public health. Moving to develop a standards-based approach for that, moving to implement systems that electronically connect up clinical care with public health, because of the benefits of electronic reporting in routine as well as bioterrorism surveillance. Another initiative that is currently being evaluated is in the early detection areas, BioSense initiatives, which works with many different data sources, some of which have been described earlier in this call. The Epi-X initiative is around secure communications for public health professionals, and for other participants in public health.

And then the Health Alert Network has been working for some time to enable the broad broadcasting of alerts in a very emergent, rapid fashion to get information out when there is indeed a problem. Other systems involved, initiatives involved, include activities in the area of outbreak management support, the smallpox vaccination system, which has advanced our ability to administer vaccine, and stockpile systems for supporting response. Now, we're really trying to bring these together into one integrated view. And it's Dr. Gergberding, the head of the CDC's vision, that we should have one Public Health Information Network that's a standard- based approach to the implementation of these different functional systems across the many different organizations that participate in public health so that these systems can work together.

And in fact, technical standards, both data and technical systems oriented standards and specifications have been developed and attached to the over $2 billion that have gone out to public health via the CDC in HRSA cooperative agreements over the last couple of years. On the next slide, we show some of that technical architecture. It's a complex slide, but it does show very clearly that there a number of different organizations, that different systems in the different organizations need to work together, and it starts to describe some of the technical standards that need to be in place, and that have been identified as part of the Public Health Information Network to support the interoperability of these systems.

Cindy: John, can you tell us exactly how the PHIN works?

Dr. Loonsk: Well, I've alluded to a little bit of it. The process overall is, first we've tried to use some of the techniques of modern systems development, even though what we're applying this to is not to an individual software system, but to, in fact, a multi-organizational architecture that is the Public Health Information Network. And in that regard, we've tried to work to capture the business requirements to support the different public health systems. Frequently, having those requirements articulated is very helpful in terms of making sure that systems that are built meet those different roles, and fulfill the different requirements. For example: the difference at times between a vaccine administration system and a smallpox registry—or a vaccination registry that might have been developed for some similar, and sometimes overlapping but different purposes.

Having identified the business requirements, worked to identify the relevant industry standards, both technical and data, and then really developed the very specifications that are based on those industry standards that are concrete enough to allow for systems to exchange data to work together. Then as I alluded to before, funding through those specifications, and the technical standards, and the data standards that were attached to the different cooperative agreements I referenced previously, are indeed requirements for the use of those monies, so that if information technology systems are built with those monies, or purchased with those monies, they need to meet those specifications.

We've also found that it's helpful to develop functional software, transitional software, that implements those technical standards that allow the systems to work together, but also can advance that activity. Very frequently, people are interested in using the industry standards- based approaches, but really want to produce a system immediately to meet needs, and it's hard to break that immediacy cycle and implement a system that can work according to a standards- based approach. So, transitional software and functional software that implement things like simple message exchange, bi-directional message exchange between two partners, has been one of the targets. And then, indeed encouraging the partners in the public sector to implement the specifications as well. And moving into the area of conformance testing to make sure that systems do indeed meet those standards.

Cindy: John, how can the members of our audience use or build off the standards in their own States or localities?

Dr. Loonsk: Well, the first thing is to really have a sense for what the requirements are and to try to work those requirements and those standards into the software that is developed and software that's purchased. So, the general process of good software design in terms of really identifying the specific requirements of the processes that the systems are meant to serve. And then also, do they meet the specific requirements of other organizations in public health that may be a partner of yours? Does the lab information management system in a lab allow for the standards-based results reporting that can be used by another health department system, or by another clinical system?

And then when the active developing or implementing these systems is worked through, are those technical specifications written into the specific contracts, and is there language written into those contracts and into those project plans that really achieves some degree of implementation assurance? And then, to indeed work to try to see that the commercial components are standards based, and that one is prepared to test the systems to make sure that they're going to work in this broader environment.

Cindy: John, we're going to wrap up with you soon, but before we do that, we just wanted to know how the interested audience members can find more information about the PHIN.

Dr. Loonsk: Well, the best place to go is really the PHIN Web site which is at www.cdc.gov/phin, and that's a good place to start. There's a listing of the data and technical specifications and the conceptual framework for the Public Health Information Network. Also listed on that site is a telephone number and an E-mail address for technical assistance which is provided by the CDC to support the Public Health Information Network, and there are a number of people who would be very interested in following up to try to make sure that the information is provided and help can be provided as well.

Cindy: John, thank you, and we're going to come back to you during our question and answer segment. And in a moment we are going to open up the lines for questions from the listening audience. But first, let me tell you how to communicate with us. There are two ways you can send in your questions. The first is by telephone. If you're already listening on a phone, press star (1) to indicate that you have a question. If you're listening through your computer, and want to call in with a question, dial 1-888-496-6261, and use the password 'bioterrorism' then press star (1). While asking your question on the air, please do not use a speakerphone or cell phone to ask your question. And if you're listening through your computer, it's important that you turn down the volume after speaking with the operator. There is a significant time delay between the Web and telephone audio. If you want to send a question via the Internet, simply click the button marked Q and A on the event window on your computer screen, and type in your question, and then click the 'send' button. One important thing—if you prefer not to use your name when you speak with us that's fine, but we would like to know what State you're from, and the name of your department or organization. So, please provide those details regardless of whether your question comes in by phone or Internet.

As you're formulating your questions and queuing up on the phone lines, I'd like to say a few words about our sponsors. The mission of AHRQ is to support and conduct health services research designed to improve the outcomes and quality of healthcare, reduce it's cost, address patient safety and medical errors, and broaden access to effective services. Two of AHRQ's operating components helped to produce this series of audio conferences. First, AHRQ's User Liaison Program serves as a bridge between researchers and state and local policymakers. ULP not only brings research based information to policymakers, so that you are better informed, but we also take your questions back to AHRQ researchers so they're aware of the priorities at the state and local level. Hundreds of state and local officials participate in ULP workshops every year. Secondly, AHRQ's Center for Primary Care Prevention and Clinical Partnerships, provides expertise and leadership on primary care practice and research, both within AHRQ and at the Department of Health and Human Services. The Center supports extramural and intramural research that informs a wide range of issues related to primary care practice and policy.

I'd like to take a quick moment to thank Dr. Sally Phillips, Director for AHRQ's Bioterrorism Preparedness Research Program, and the Center for Primary Care, Prevention, and Clinical Partnerships. Sally has been instrumental in helping us produce this series. ULP and the Center for Primary Care, Prevention and Clinical Partnerships, hope that today's Web-assisted audio conference and the remaining event in the series will provide a forum for productive discussion between our audience and policymakers and researchers. We'd appreciate any feedback you have on this Web-assisted audio conference, and at the end of today's broadcast, a brief evaluation form will appear on your screen. Easy to follow instructions are included on how to fill it out. Please be sure to take the time to complete the form. For those of you who have been listening in by telephone only, and not using your computer, we ask that you stay on the line. The operator will ask you to respond to the same evaluation questions using your telephone keypad. Your comments on this audio conference will provide us with a valuable tool in planning future events that better suit your needs. Alternatively, you could E-mail your comments to the AHRQ User Liaison Program at https://info.ahrq.gov.

Now, why don't we go to some questions from our audience. The first one is from Christina Isaacs for Mike Wagner, and the question is: "What are the current companies that have agreed to transmit sales data to the NRDM System, what are they?"

Dr. Wagner: Well, Christina, those companies are very happy to participate on a patriotic basis with this project. And they don't want any credit for their participation, which is a polite way of me saying that they would prefer to remain anonymous.

Cindy: A question, but it wasn't very polite. (Laugh) A question from Rick Skinner for Michael Shannon. "You mentioned the importance of surge capacity. How important is geographic information systems technology in a hospital's surge capacity planning, preparedness, response and recovery? And can you cite examples where GIS is being used or developed in this regard?"

Dr. Shannon: I think that GIS is going to be vital in syndromic surveillance and the creation of detection tools. We actually have created a program that I did not get the opportunity to describe in detail, which is AEGIS. As Dr. Wagner pointed out, when someone enters an emergency department, one key piece of data they routinely provide is their ZIP code. So we are now able quite easily to map the location using a GIS program to map where someone visiting an emergency department lives. So, using that, it's one thing to have 100 children come to our emergency department with the complaint of sore throat, but what if 100 children from the same community come with the complaint of sore throat. So, having a GIS system in place permits you to identify something that may be going on strictly on the basis of where the person lives.

Cindy: We have a caller from California; David Beeson is on the line. Hello?

David Beeson: I work for the Karut Tribe of California, and we're an Indian tribe. We have three clinics, we have about 30,000 outpatients a year. My question is for Dr. Shannon. In addition to looking at purpose of visit. If we wanted to create our own profile for visits, in addition to purpose of visit for rash, sore throat, fever, nausea, vomiting, and separating out well-child and immunization visits, what else would we be looking at to create our own profile?

Dr. Shannon: What seems to be occurring in terms of making these systems more uniform, is that you first divide illnesses into some number of categories. We've used 13. Others have used seven, of systems-based chief complaints. From there you can begin the process of examining prior data. Any existing data you have from any number of previous weeks or months or years, to get a sense of what the expected is. Because you must have a reasonable sense of the expected or the forecast volume, the forecast range of complaints, before you can identify an aberration. But it's really not a difficult process. It's really simply to create that list of chief complaints, and then to examine your own archived data to get a sense of what you would expect.

David Beeson: Okay. And that chief complaint listing, the 13 and seven, is that available at some location, or is that a unique marker?

Dr. Shannon: Well, I'm not sure I can direct you to any specific site on the Web. What I could tell you is that you could notify our center at the Childrens' Hospital, Boston, or you could-is contact information provided to reach any of us?

David Beeson: Yes.

Dr. Shannon: Wonderful, you could contact our center and we'd be happy to show you and lend you our chief complaint categories.

David Beeson: Okay, well, thank you.

Cindy: Thank you for calling. Just a reminder, we of course welcome your calls. If you'd like to call in a question, the number is 1-888-496-6261. And again that's 888-496-6261, and use the password 'bioterrorism' and then press star (1). A question for Michael Wagner. "What States are running the RODS systems themselves, and which States are having the RODS Lab run the system?"

Dr. Wagner: For the most part, States are letting us operate the computers and the data come from the hospitals over the Internet in encrypted form, and the results are viewed using Web- based interfaces. So the States that are letting us do all the work include Pennsylvania, Utah, Ohio, and Atlantic City. There's one brave State out there, the State of Michigan, that's installing the software on-site at the State level.

Cindy: And how much is it for a State to contract with the RODS laboratory?

Dr. Wagner: For the ASP services, up until now we've been doing it for free under grant funding. As the grant funding tapers down, we're working on a $4500 per health system initial hookup fee for all the HL7 related work, and then something like 10-20 percent per health system for annual maintenance. Which is very inexpensive. And mind you, a health system can involve 20 or 30 hospitals, so we just charge per message router that we have to connect to. So, the entire State of Utah, for example, involves just two connections.

Cindy: From the Missouri Hospital Association, Becky Miller is on the phone.

Becky Miller: My question is for Dr. Loonsk. I wonder how, what process or system the CDC has set up to work with specific State health departments relating to the Public Health Information Network. Because it looks like there are pretty comprehensive standards that are being developed through the CDC and I know several States are also doing some parallel projects. And I'm curious what system is set up to coordinate those activities nationally with the State public health departments.

Dr. Loonsk: Sure, if you go to the PHIN Web site, you can see an E-mail address and a telephone number for the technical assistance group at the CDC which includes some expert support in the Public Health Information Network. The types of support that have been provided include, obviously, phone support, as well as on-site support in particular circumstances. The availability of some of the functional software, so for example the Public Health Information Network messaging system which allows for bi-directional message exchange, and also, assistance for health departments with contracting activities, with standard language and some standard vehicles for achieving some of the technical needs that the language of which can be implemented into contracts or can be used for health departments that can access for example, the GSA vehicles to direct assistance.

Becky Miller: Are there systems in place for the technical experts at State health department to actively participate in your work groups as you're developing through the specifications? Or, any mechanism that you're including them through that process?

Dr. Loonsk: Yes, and in fact we had the first Public Health Information Network stakeholders meeting this year. It was attended by over 1200 individuals who were interested in public health IT functions and support. There were requirement activities and different breakout sessions that occurred at that conference. There are also two working groups that have been set up as part of the CDC Information Council with equal participation by the CDC, by ASTHO and NACCHO in working on both the technical specifications and being stewards of those technical specifications. And another working group on the data specifications. And, you can feel free to contact the technical assistance people at the PHIN Web site who can put you in touch with appropriate representatives for each of those working groups.

Becky Miller: Okay, thank you.

Cindy: Thank you. Also from Missouri, we have Angela on the phone. Hello.

Angela Kretzinger: Hello, yes, this is Angela Kretzinger, I'm the State Bioterrorism Surveillance Coordinator for Missouri.

Cindy: Thanks for calling.

Angela Kretzinger: Thank you. My question is about the universal usability of these systems that have been presented today. A chief topic of last year's National Syndromic Surveillance Conference in New York was different States and different communities are building their own systems, and what about the ability to compare information, say, State-to-State, or region-to-region?

Dr. Wagner: I can take a first attempt for Angela, who I know fairly well from prior work. Good to talk to you again.

Angela Kretzinger: Good to talk to you.

Dr. Wagner: I think it depends on the data type to some extent, to whether there's a national coding standard for the data, in which case questions of integration become much less difficult. So, if you just take the concrete example, over the counter medications, there's a standard coding system that doesn't change from State-to-State. So if you managed, for example, in Missouri, to persuade one of your local retail chains, say a grocer, with 20, 50, 100 stores, to start sending you UPC level data, it would be fairly trivial to merge those data with data that we're getting from some of these big national chains. If you take, just at the data level, chief complaints, assuming the English spoken in Missouri is the same English spoken in Pittsburgh, you'll have the opportunity to merge data. Now, the other types of data that you're collecting in your healthcare system though, becomes problematic. So for example, blood cultures, or—you probably have an idiosyncratic coding system in your laboratory information systems and your hospitals that are different than the ones in Pittsburgh. So, a fair amount of translation table work would have to be done, until such time as the LOINC and SNOMED standards being promulgated by the CDC and other entities permeate the dense forest of administrative barriers that compromise health systems today. Now, John probably can talk better than I can about some of the other areas in which standardization would be required for something developed in Missouri to be interoperable or virtually part of a one unified system, such as architectural standards and interface messaging standards.

Dr. Loonsk: Sure, Mike is absolutely right in pointing to data standards as an important first step in this regard. And the Federal government, for its purposes, has been moving aggressively through the Consolidated Health Informatics, one of the E-Gov initiatives to identify standards that it will use in the interchange of data such as HL7 lab result methods such as LOINC for naming of tests, and that. And recently SNOMED has been licensed so that it can be used much more broadly. He's right also in pointing out the fact that there's a lot of work to do to get to those vocabulary and data standards to try to make sure that what we are exchanging is comparable.

But it is critically important, particularly in the early detection area, that we try to coordinate what we're doing as much as possible. A lot of the early detection data sources that show great promise have still not been rigorously evaluated, and need to be evaluated in a consistent way so that we can determine which are of greatest value to identification of an event. And then, as also suggested, we have to consider the different technical standards that will allow for these systems to move into the next stages of management and public health response to ensure that indeed, when we do identify an event, we can do our best to ensure that that event is minimized to the best possible effect. And that the data that frequently need to be exchanged between different organizations can be understood when one organization is exchanging them with another.

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