Information Sharing and Collaboration: Applications to Integrated Biosurveillance: Workshop Summary (2012)

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3 State and Local Experiences Biosurveillance begins at the local level. Data gathered by health care providers, public health officials, emergency responders, and others are the foundation on which biosurveillance is built. These data then must be analyzed to generate the information and knowledge that drive specific actions. Three speakers at the workshop—representing state and city perspectives—discussed how people at these levels prepare for and respond to biothreats and events, both from the planning and surveillance perspective and from the coordination and response perspective, high- lighting the importance of developing effective collaboration early. Analysis of previous episodes and planning for possible future events are both necessary to uncover and fill gaps. BIOLOGICAL PREPAREDNESS AND RESPONSE IN NEW YORK CITY1 Under normal circumstances, within and between organizations and sectors, information sharing is considered maladaptive, said Joel Ackelsberg, Bureau of Communicable Diseases, New York City Depart- ment of Health and Mental Hygiene. Information is power, and sharing of information may lead to loss of control or autonomy. Unidirectional in- formation flows are preferred, especially if that direction is pointed to 1 This section is based on the presentation by Joel Ackelsberg, Bureau of Communica- ble Diseases, New York City Department of Health and Mental Hygiene. 23 

24 BIOSURVEILLANCE INFORMATION SHARING AND COLLABORATION oneself and one’s organization. As Ackelsberg quipped, a common per- ception is that “sharing information is for chumps.” In emergencies, however, these generalizations no longer apply. Sharing information supports common missions, goals, and objectives. Multidirectional information flows are preferred to arrive at a common operating picture. By examining experiences before and after 9/11 from this perspec- tive, questions that were asked before the terrorist attacks can be re- framed in ways that are still relevant today. Responses to an Event Public health responses to a covert biological release fall into six categories, Ackelsberg observed: • Detection • Notification of key partners and the public • Rapid investigation to confirm diagnoses, identify hazards and risk factors, and track impacts • Risk communication and safety recommendations • Coordinated interventions, including mass treatments and prophylaxis • Recovery Biosurveillance is typically interpreted to include the first three of these items. However, most biosurveillance today, Ackelsberg posits, focuses on detection and notification, but not characterization. These lat- ter two tasks are “complicated and messy,” said Ackelsberg. “It takes people who are experienced to go through information, to share it, to analyze it, to interpret it. It involves instruments, but it goes well beyond gizmos. It’s heavy on people and heavy on the skills that they bring to problem solving.” Before and After 9/11 The New York City Department of Health and Mental Hygiene was working on biological preparedness even before 9/11. It had instituted an internal incident management structure and had established interagency coordination with the mayor’s Office of Emergency Management, law enforcement, New York City hospitals, and regional public health agen- 

STATE AND LOCAL EXPERIENCES 25 cies. It had enhanced surveillance systems and had prepared for the mass distribution of antibiotics. It provided biological threat agent training for providers, worked on emergency communications, and conducted fre- quent tabletop exercises and drills. “Exercises are one thing; experience, of course, is another,” said Ackelsberg. Though the department was primed for scenarios like the 9/11 attacks and the anthrax incidents that followed, it could never be ready for such events. The agency was nine blocks away from the World Trade Center and had to relocate to its laboratory. “Our assistant com- missioner physically carried a couple of computers into the van to bring with her to the lab because it was on those computers that we had our software to broadcast faxes to the medical community.” The city had lost its emergency operations center, and communications were almost non- existent. “We were operating in the dark. We had lost colleagues. We had lost phone service. It was very difficult for the public and our part- ners to communicate with us.” The department characterized the initial problems after the attack, many of which involved the environment and the need for shelter, and established how best to address them. Large numbers of people who were exposed to harmful substances were evaluated, and the department still maintains a registry that tracks those impacts. The department also had the benefit of Epidemic Intelligence Service officers, Centers for Disease Control and Prevention (CDC) employees in a 2-year training program who respond to requests for epidemiological assistance, who were posted in 15 hospital emergency departments collecting information around the clock. After the first anthrax inhalation case was identified in Florida, the department started active surveillance with intensive care units, engaged microbiology laboratories, and worked with infectious disease and infec- tion control personnel. When anthrax cases began to occur in New York City, joint public health and law enforcement teams conducted multiple and simultaneous investigations of thousands of suspected cases. Public health liaisons within the criminal investigation made it possible to share ideas, generate hypotheses, and share analyses. “All of this was extreme- ly personnel heavy,” said Ackelsberg. “It’s people who have to collect the data—or at least interpret the data—go through and clean up the data, and figure out what’s going on.” 

26 BIOSURVEILLANCE INFORMATION SHARING AND COLLABORATION Biosurveillance-Related Gaps The anthrax investigations revealed a number of biosurveillance- related gaps in the way information is collected and shared, according to Ackelsberg, including the following: • Outreach is needed to clinical communities to aid in physician reporting and dissemination of information. • Rapid mobilization capacity is needed across agencies to handle surges in reported cases, including case management and laboratories. • Enhanced data collection and data management tools are needed, including integration with laboratory systems. • It is advisable for laboratory and law enforcement personnel to develop relationships prior to an incident. • It is potentially hazardous to deploy new surveillance systems during emergencies; “alarms” will occur frequently. • Improved information sharing is needed between investigations located in other jurisdictions. The underlying conclusion that can be drawn from these gaps, said Ackelsberg, is that reliable communication underlies all effective re- sponses. As a result, communication has been a focus of change since 9/11 in the public health system in New York City. For example, the De- partment of Health has a protocol—“well exercised, unfortunately”— with the New York Police Department and the Federal Bureau of Inves- tigation. “This is a good example of the way in which information needs to be shared in order for common missions and objectives to be success- fully reached.” It is leveraging social networks for communications and public health surveillance. The public health system in New York City has made different amounts of progress in different areas, Ackelsberg concluded. But in- formation sharing will continue to be a major emphasis as the Depart- ment of Health prepares for future events. “The more that we can find ways to convince our colleagues, both in our agencies and in others, that information sharing is not for chumps, and that information sharing can actually bring us the knowledge that we need when responding to an in- cident, the more successful that will be in the long term.” 

STATE AND LOCAL EXPERIENCES 27 Discussion In response to a question about data integration centers, Ackelsberg observed that local and state health departments should be seen as cus- tomers and not just providers of information. The best people to interpret data are the ones who routinely use the data and are familiar with the patterns that exist at the local and state levels. He also pointed to the importance of using words carefully. For ex- ample, “aberration” is a better term than “alarm.” “When we instituted drop-in surveillance in the fall of 2001, we had alarms going off all over the place. We had no baseline, so we decided the first thing we needed to do was to start calling it something else.” The terms used should convey the uncertainty of a situation while accurately describing and interpreting the available information. This becomes especially hard when people in different agencies are doing different interpretations or analyses, requir- ing not only communication but iteration. “What we thought we under- stood on day one is going to be very different from the way that we understand the situation days into the incident.” Finally, Ackelsberg observed that all public health is local, but it may not be local to the place where a person lives. A place like New York City has millions of people coming in all the time by plane, by bus, and by boat, in which case local is much more expansive than the five boroughs. Meanwhile, the ability to monitor diseases around the world has huge vulnerabilities, despite the potential influence on localities like New York City. SEEKING ACCESS TO SURVEILLANCE DATA IN MARION COUNTY, INDIANA2 Joseph Gibson, from the Marion County Public Health Department— which includes the city of Indianapolis—described his department’s ex- periences in gaining access to three kinds of surveillance data: clinical data, school absenteeism data, and data from the state health department. In doing so, Gibson highlighted issues of sharing and trust, and how to overcome such barriers. The Health Insurance Portability and Accountability Act has a clause that allows health care providers to give clinical data to public health 2 This section is based on the presentation by Joseph Gibson, Marion County Public Health Department, Indiana. 

28 BIOSURVEILLANCE INFORMATION SHARING AND COLLABORATION agencies. But the clause does not require the data to be shared, so hospi- tals can be reluctant to do so. “They aren’t covered for the risks that they open up themselves to if they do give us the data and something goes wrong,” Gibson said. In addition, state laws address how clinical data may be used in research, but omit public health uses, which puts such uses into a gray area. Similarly, schools are not required to give the public health depart- ment absenteeism data. They did so during the H1N1 epidemic out of a sense of civic duty, but schools are strapped just trying to cover their core missions, said Gibson, so they do not have much time or resources for public health activities. Furthermore, when they were willing to share these data, the format and content of the data often varied. As a result, the public health department had to write custom computer programs and use manual processes to make the data useable. Finally, the relationship between the Marion County Public Health Department and the state health department has varied from close to dis- tant. Generally the state health department has been cooperative, but it needs to be careful not to violate state law, and these laws are not con- sistent across diseases. Furthermore, state officials have worried about establishing a precedent with Marion County, which is the largest health department in the state and has greater resources, that then would apply to counties with fewer human resources and less ability to protect the confidentiality of the data. What Does Not Work Gibson described several approaches that have not worked in re- questing data to protect public health at the county level. First, broad re- quests for data are almost always rejected. “I had to provide specific uses to which I was going to put the data, and then I could start to get the data. And slowly, we’ve been able to develop more trust and expand those uses, but still, I have to be very specific in terms of what I’m going to use this data for.” Relying on authority, power plays, or legal debate also has not worked. The law generally does not require sharing and is often gray, and recourse to authority often generates resistance. Not understanding the restrictions faced by senders is a barrier to sharing data, Gibson said. “As I understand what their processes are and understand what their greatest concerns are about this data, I can much 

STATE AND LOCAL EXPERIENCES 29 more carefully draft my requests and my processes to fit theirs, so I’m more successful in getting the data.” Finally, it does not work to request data that senders are not already gathering. Requests for data that are not already in the system generally are not successful. “Anything where I’m trying to change their work pro- cesses has almost always failed.” What Does Work The most important element in making data sharing occur, said Gibson, is trust. Understand a provider’s data protection rules can help build that trust. Also, finding opportunities to interact with data providers is important. “Whenever I have an excuse to go meet with my counter- parts at the state, I go meet with them. Whenever there’s some event go- ing on that they might be interested in, I try to get them there, so that we just have more interaction. That interaction builds understanding, and that understanding makes them much more comfortable in sharing the data with me.” Finally, it is important to be incremental and start with narrow requests, said Gibson. As the sender recognizes that data are han- dled carefully, it will be easier to get more data in the future. The issue of trust is one reason why Gibson can be reluctant to share data with the federal government. His sources of data need to know that he is managing their data carefully. If he violates that trust—for example, by sending data to the federal government for one purpose that are then used for another purpose, such as law enforcement—the data provider might stop providing Gibson with the data. Another approach that works is to minimize the burden and maxim- ize the value for the sender. For example, Marion County and then the state of Indiana made a substantial effort to get syndromic surveillance data back to hospitals so they could see how the data were being used and use these data themselves. Similarly, schools were included in situa- tion report distribution so they could see how their absenteeism data were being used and could understand the value to communities. For school absenteeism data, every school district received a summary of its absentee data and a comparison to the aggregate for all districts. Hospi- tals also received ways to compare their information to the information for all hospitals. Along the same lines, during the H1N1 epidemic the public health department distributed swabs to clinics and then collected them every day to take to the laboratory. “It was really work intensive, and eventual- 

30 BIOSURVEILLANCE INFORMATION SHARING AND COLLABORATION ly it was not sustainable. But we tried to set up a system that was going to minimize the amount of work [the clinics] would have to do.” Similar- ly, with the schools, the department accepted absenteeism data in many different formats and then converted the data to a more useful form. A legal mandate or top executive support is often important, said Gibson. Even institutions that want to provide data need legal coverage to do so. School absenteeism data did not become available until superin- tendents gave their blessing. Finally, finding the right person to deliver the data can be critical. In schools, the right person was sometimes an information technology spe- cialist and sometimes a nurse. “We had school nurses doing yeoman’s labor to give us the information . . . because it was important to them.” Discussion A workshop participant asked about the efforts of the Office of the National Coordinator in the Department of Health and Human Services (HHS) to promote sharing among health care organizations through common standards and funding incentives and to build an interoperabil- ity framework to house information, suggesting that biosurveillance ef- forts should be coordinated with such health information systems efforts. Gibson remarked that the states are working hard to ensure that they re- ceive this information as well, but they have very little funding to do so. “At the local and state level, there’s a lot of activity around that.” Ackelsberg asked about sharing information while protecting the interests of an agency and its partners, and Gibson responded that “the more you share information, the stronger your community gets.” He said that he has a sign on his wall that says, “Information is power, so spread it around.” Information is not lost by sharing it—it just builds. However, when data come from somewhere else, it is advisable to direct people to the source, “because we don’t want to be sharing somebody else’s data; we’d rather have it come directly from them.” This is also an issue when law enforcement becomes involved, be- cause hospitals are unlikely to keep sharing information with a public health agency if that information is then passed on to law enforcement agencies, said Gibson. “They’re giving me that information for a very specific use, and if I’m sharing that information in a way that goes beyond that specific use, then they’re going to stop giving me the information.” 

STATE AND LOCAL EXPERIENCES 31 Moderator Lisa Gordon-Hagerty noted that an unwillingness to share means that information will be stovepiped. “The whole idea here is for information sharing, recognizing we’re talking about two very different cultures—the public health community and the law enforcement com- munity.” How can the wealth and power of information be spread around if barriers exist between agencies? Gibson said that he has to maintain the trust of the people who are providing him with information. “That’s the tension that I have to try to work through.” INFORMATION SHARING FOR BIOSURVEILLANCE IN NORTH CAROLINA3 North Carolina relies on two main systems to detect disease out- breaks, said Jean-Marie Maillard, North Carolina Department of Health and Human Services (NC DHHS). One is the North Carolina Electronic Disease Surveillance System, which provides case reports and laboratory results. The other is the North Carolina Disease Event Tracking and Epi- demiologic Collection Tool (NC-DETECT), which gathers information from emergency departments, poison centers, and ambulance runs and is used for syndromic surveillance and situation analysis. NC-DETECT was started in the 1990s by a group of researchers at the University of North Carolina who were trying to gather information from emergency department visits. The NC DHHS partnered with this group and, after 2001, received increased funding to improve disease surveillance and epidemiologic capacity. The department also worked with the hospital trade organization in North Carolina to ensure that emergency department data would be reportable. In addition, it drew on data from the Carolina Poison Center, which receives about 120,000 calls per year, about 20 percent of which are from physicians and emergency departments. NC-DETECT provides data in the form of customizable tables, graphs, and maps and is available 24 hours a day. Reports from emer- gency departments are received twice a day from every hospital reporting to the system, and for the poison center the update is every hour. Users have rights defined by their role, so a local person working with the hospital system could see local data, a regionally based public health professional 3 This section is based on the presentation by Jean-Marie Maillard, NC DHHS. 

32 BIOSURVEILLANCE INFORMATION SHARING AND COLLABORATION could see regional data, and users at the state level could see the statewide picture. As an example of the type of event seen by NC-DETECT, Maillard cited a 2007 outbreak of salmonellosis caused by contaminated peanut butter. Hospital visits immediately rose, along with a sharp and quick increase in calls to the poison center. The system “allows us to look at different aspects of a health event in the community,” Maillard said. Surveillance networks in North Carolina include local health de- partments, including communicable disease nurses, hospital-based epi- demiologists, laboratory directors, and epidemiologists at the state level who can provide support remotely and on site as needed. For instance, the state has used funding received since 2002 to set up a network of hospital-based public health epidemiologists. The state also has a system that can look into the electronic medical records of patients in real time. This system scans every day not just for bioterrorism but also for everyday public health issues. Epidemiologists at the state level then can deploy if onsite assistance is needed. The state has a number of task forces and task-oriented workgroups that allow potential collaborators to meet each other and work together. For example, the Food-Borne Disease Task Force, created by the gover- nor in 2003, combines staff from 20 different organizations who meet six times a year. These groups make it possible to convert data into actiona- ble information, said Maillard. These task forces, which originally started as a means to convene relevant stakeholders around specific issues, also serve the purpose of maintaining connections and relationships. Finally, North Carolina uses checklists, situation reports, and an in- cident command system for larger events of public health significance. It has established memoranda of understanding among the departments of health, agriculture, and environmental and natural resources (the latter of which has since been combined with public health). It consults and works with CDC, the Food and Drug Administration, and the Depart- ment of Agriculture. It even has a team of student volunteers at the Uni- versity of North Carolina who are available to help with call lines, interviews, and case control studies. The System in Action An example that illustrates the operations of the system was the re- call of a brand of chili associated with botulism. Even though a holiday limited the number of staff who were available, Maillard was able to 

STATE AND LOCAL EXPERIENCES 33 immediately find 12 patients who met the botulism syndrome case defi- nition. He then further examined these cases to see if they were associat- ed with the food product. The information was shared with the department in charge of the recall, which found that many stores were still displaying the product. Personnel “visited 16,000 stores and re- moved 35,000 cans of product, which was more than the rest of the coun- try combined.” Another example involves vectorborne diseases such as Rocky Mountain spotted fever, which has a high incidence in North Carolina. In 2003 the West Nile Virus Task Force was created to deal with the spread of the West Nile virus, and the task force was later expanded to be the Vector-Borne Disease Task Force. The task force meets regularly with not only public health staff but also entomologists, local health depart- ments, academicians, and members of the public to share surveillance data, talk about what is known and not known, and share study findings. Similarly, the Disaster Epidemiology Group has worked on hurricanes, floods, wildfires, heat waves, and other events to enhance the epidemiol- ogy capacity for disaster response. The state has learned through successive deployment how to conduct surveillance projects, community assessment projects, and environmental studies quickly, said Maillard. An infection control program in the state has detected disease outbreaks associated with reuse of single-use prod- ucts that should not be shared among patients. “It works both ways—we tell them about the cluster of outbreaks we are informed about and inves- tigate, and health service regulation tells us about the findings they no- ticed during inspections.” The North Carolina Intelligence Sharing and Analysis Center pro- vides two-way information sharing with law enforcement through public health staff with security clearances. The state also has signed a memo- randum of understanding with the local health departments of the Eastern Band of Cherokee Indians that describes who will do what with regard to information sharing. Discussion In response to a question about the usefulness of memoranda of un- derstanding, Maillard responded that they have the benefit of laying out who could get the information and how information will be shared. “We all work from the same large base as quickly as possible,” he said. Regarding a question about collecting information from veterinary 

34 BIOSURVEILLANCE INFORMATION SHARING AND COLLABORATION clinics as well as emergency departments, Maillard pointed to several collaborations with the agricultural sector, though funds for such activi- ties have been diminishing. Animal surveillance generally has been at a more basic level than human surveillance, he said, but animal surveil- lance in North Carolina has had extensive experience with mapping and has been willing to share its mapping structure with public health agencies.