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Biosurveillance and Disaster Reporting: Barriers to Accuracy and Timeliness Nia Llenas UMUC Peer Reviewer: Carl Mueller

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Executive Summary This report details the purpose of biosurveillance and disease reporting systems and the barriers to early adoption and success. Much like the federal government’s BioSense project, state and local health departments are rapidly deploying their own disease surveillance systems, in an effort to connect the dots between local and regional health care providers. Unfortunately, implementing and maintaining a surveillance system requires skill and attention that many health professionals have yet to practice. While previous studies have shown success in timeliness and completeness of data capture and transmission, much of the workflow is left to human intervention. Several areas to be considered when implementing disease surveillance or disaster response systems are patient data privacy/security, system languages and coding, and staff training. Dually noted, are the limitations to current research, namely the small sample sizes in previous work and the lack of accuracy in electronic laboratory reporting. In considering biosurveillance system implementation, health care administration must look to secure patient data behind facility firewalls. Additionally, ensuring that information is contained in HL-7 fields, coded in LOINC, SNOMED, IDC-9 and NDC, minimizes delays in downloading and translation by public health officials. Finally, staff should be trained diligently to recognize the importance of reporting notifiable diseases, completely and in a time-efficient manner.

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Table of Contents

1. Introduction a. Purpose b. Problem c. Background d. Objectives 2. Literature Review a. Implementation b. ELR and EMR reporting 3. Barriers to adoption

Patient data security

b. Languages c. Training staff d. Reporting and monitoring limitations 4. Conclusion


6. Appendices 7. Glossary

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Introduction In 2007, the Department of Health and Human Services released a working draft of the Biosurveillance Workgroup Priority Areas. The stated focus of the workgroup is to “recognize the critical importance of an integrated and interconnected public health and healthcare delivery system that enables real-time, secure, and appropriate bi-directional exchange of information” (Biosurveillance Priority Areas, 2007). Specifically, the workgroup centers around the effort to produce a secure and timely method of transmitting standardized data from a patient’s electronic medical records (EMR) and electronic laboratory systems (ELR) to public health officials and back. This direct communication between public health systems, healthcare delivery organizations, VA, laboratory organizations and poison control centers will result in real-time reporting of adverse events and outbreaks, while providing current public health statistics to clinicians. Several factors play a role in the success of systems like BioSense; real-time transmission, geospatial mapping, patient privacy, and concise ICD-9 coding are some of the areas under examination that can affect the reliability of surveillance systems. In this paper, the barriers to timely, accurate surveillance data are investigated in conjunction with the efforts of several states to implement effective surveillance and disaster response systems. In the past, communicable disease outbreaks and regional health statistics have been largely reported on paper-based systems. Early adoption of electronic laboratory reporting systems have subsequently reduced reporting errors while increasing test volume, thereby being hailed as milestone in disease surveillance (Nguyen, Lorna,

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Mostashari, & Makki, 2007). Unfortunately, problems still arise and early adoption has been slow as public health officials determine vocabulary standards of laboratory code, patient identification/security and HIPPA considerations (Overhage, Grannis, & McDnoald, 2008) Currently, public health is still reliant on clinicians to interpret laboratory data and assign specific demographic characteristics to that data in order to transmit useful information to public health officials. This process is time consuming as most of it is still done by fax, email or phone, resulting in incomplete data capture (Klompas, et al., 2007). Overhage, Grannis and McDonald (2008) recently reported that in a study of the Vermont Department of Health, 71% of all infectious cases were reported directly by laboratories, giving more meaning to the need for automated ELR and EMR systems link to public health officials. This present research attempts to address the problems associated with the implementation of detection systems, data collection and data transmission to the national disease surveillance system and subsequent effects of disaster response on the health system. This directly relates to the concepts under review in the University of Maryland University College HCAD 610 course. Literature Review Implementation Previous research provides similar experiences with structuring and implementing surveillance systems. Brownstein and Mandl (2006) reported the efforts of the Massachusetts Department of Public Health transforming its AEGIS system into a realtime influenza monitoring system using chief complaint data from emergency

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departments to formulate the predictions of the start of influenza and pneumonia outbreaks, subsequently comparing data to trends of the previous five years. Although AEGIS was able to accurately predict influenza outbreaks, some systems are struggling to transmit consistently accurate reports. Grannis, Wade, Gibson and Overhage (2006) presented early finding from the Indiana State Department of Health’s statewide surveillance project. The platform is built on a standard of HL7 messages containing chief complaint data, clinical messaging and ELR, transmitting results from emergency departments to local and state health departments for review. Public health officials are attempting to reduce the number of false positive signals that prompt human interaction and review, furthermore causing unnecessary staff attention and investigation. On a larger scale, clinical systems are rapidly testing and implementing surveillance systems to include multi-location hospitals and outpatient facilities. Gundlapalli et al., (2007) detailed a pivotal study on the implementation in of hospital EMR surveillance during the 2002 Winter Olympic Games in, in which, a rules-based system was developed to monitor admission/discharge/transfer, laboratory and radiology databases of Utah’s University Hospital system. Klompas et al. (2007) also undertook multi-practice implementation, which succeeded in protecting patient privacy in data transfers to public health authorities by keeping patient health information (PHI) behind the facilities firewall. ELR and EMR reporting Laboratories and hospital records play a pivotal role in disease surveillance. While labs cannot attest to the nature of patient care, they do however possess the

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“information infrastructure and processes to facilitate reporting” (Overhage, Grannis, & McDnoald, 2008). Unfortunately, the transition from paper to electronic lab reporting has been slow, according to Nguyen et al. (2007) report on the New York City Department of Mental Health and Hygiene (NYC DOMHM) largely due to improper training and low sense of urgency among laboratory staff. Additionally, Overhage et al. (2008), et al found that lack of communication with laboratory IT staff greatly hampered efforts to transition to electronic reporting methods. The use of EHR in surveillance and disaster response has been mastered by the Department of Veterans Affairs (VA) medical system. During the most recent disaster, Hurricane Katrina, the VA “rehosted” its VistA system by moving all data to Houston. In effect, they lost only four days of access and were able to create a web-based system for access to patient files of those who were displaced (Brown, et al., 2007). As an afterthought, patient data of those who survived the disaster provides real-time biosurveillance information to both the VA and Department of Defense. Data security and privacy Data security is a concern not only for patients but medical and public health officials alike. When clinics and laboratories transmit data to health departments, the CDC and the federal BioSense surveillance systems, data security parameters vary widely. The Harvard Vanguard’s Medical Associates’ Electronic medical records Support for Public health (ESP) database and software systems are located separately on location, not only to relieve any burden on the host server, but to also secure PHI behind the practice firewall until information is sent to the health department (Klompas, et al., 2007). Similarly, the TheraDoc system, utilized during the 2002 Winter Olympics,

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available for access through the hospital intranets, was subject to the same security layers as the hospital itself. In this instance, only infection control practitioners were provided access to surveillance data. (Gundlapalli et al., 2007) The aforementioned models serve as examples of measures taken to properly secure access and transmission of PHI. Unfortunately, there are issues with securing all demographic attributes of a patient diagnosed with a notifiable condition and subsequently compiling accurate data. BioSense uses a complex set of rules to define geographic location of infection. By utilizing the reporting facilities zip code and the patient residence zip code, a common zip code is mapped and recorded as the point of infection (English, et al., 2006). Likewise, cluster detection is at the forefront of the patient privacy debate in surveillance. Epidemiologists are arguing whether the insecurity of using patient locations (home addresses) to pinpoint disease clusters outweighs the risk of less accurate data associated with using administrative regions (zip codes). Studies have shown that exact coordinates found 73% of disease clusters compared to 45% of administrative coordinates, and are likely to lead other surveillance systems to use the same information, leaving patients health records exposed. (Olson, Grannis, & Mandl, 2006) Languages Currently, there are several major languages utilized by disease surveillance systems. HL7 is the nationally recognized standard for communication between hospitals, laboratories and public health applications and is frequently used in conjunction with free-text messaging in the transmission of patient information (Grannis, Wade, Gibson, & Overhage, 2006). Equally important is the HL7 supported bi-directional communication

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in free-text, supporting quick responses to health department queries for case details from laboratories and clinic sites (Klompas, et al., 2007). The importance of HL7 in disease surveillance will become more apparent as more clinic level providers begin using EMR systems, supplying more in-depth patient information to surveillance systems. Surveillance systems also read SNOMED and LOINC codes, the universal medical and laboratory terminology used by clinicians, practices, laboratories and hospitals. Laboratories have historically used free-text coding instead of SNOMED, causing some issues in workflow for public health officials. Ideally, laboratory tests should be identified using LOINC, there results as SNOMED and finally the diagnoses as ICD-9. The NYC DOHMH saw a high numbers of false positives due to laboratory staff forsaking the use of proper codes for free-text, causing common illnesses to flag more serious rare illnesses (Nguyen, Lorna, Mostashari, & Makki, 2007). Training staff It has been suggested that the success of disease surveillance largely depends on the level of trust, respect and familiarity between health officials and healthcare personnel (Buehler, Isakov, Prietula, Smith, & Whitney, 2007). When introducing new systems and workflows to hospital, laboratory and IT staff, careful measures must be taken to stress the importance of compliance. Staff must be trained to use and trouble shoot the system effectively and efficiently. In actuality, implementing an ELR system that reports to state health systems may require site certification that depends on the staff knowledge and presence. Laboratories in New York City must complete a certification process to transmit electronically to public health departments and additionally, lab staff and IT department’s

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need training on quality assurance and database management (Nguyen, Lorna, Mostashari, & Makki, 2007). Success in reporting completeness has also been attributed to provider awareness, staff motivation, and effective processes in laboratories and clinics where systems are monitored regularly (Overhage, Grannis, & McDnoald, 2008). Therefore, staff should undergo training to stress the importance of proper coding and reporting and its implication on local and national efforts to maintian healthy communities. Reporting limitations While electronic surveillance is an effective way to monitor communicable or notifiable diseases, it does carry risks that are assumed as a result of reporting limitations. Current research is generally limited to local databases and laboratories, therefore limiting sample sizes. Equally important, many notifiable conditions do not translate well in ELR, such as tuberculosis, syphillis and meningitis. Condidtions requiring multiple or varied tests to confirm a true positive are frequently reported incorrectly and may prompt further investigation from public health officials (Nguyen, Lorna, Mostashari, & Makki, 2007) (Overhage, Grannis, & McDnoald, 2008). Recommendations A strong push towards electronic methods of storing and transmitting medical data will transform the biosurveillance industry and health care providers must prepare themselves with the knowledge and facilities to join in. Transmitting patient and disease data will no doubt require careful planning regarding vendor systems, integration into the state and local networks, designating staff, improving training and mastering quality assurance.

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Also, being aware that as technology evolves, barriers to success are consistently present. These barriers mentioned in this paper, can be overcome through new , thorough innovations in electronic laboratory reporting and expanded research in the field. Conclusion As the U.S. moves towards a more complete and connected biosurveillance system, consideration must be given to the security, timeliness and accuracy of the data and its transmission. All efforts to respect patient privacy should be taken, even if at the expense of accuracy. Furthermore, in order for system implementation and execution to be successful, laboratory teams and clinical staff must have proper training that highlights the importance of data reporting to local health departments and the CDC. Biosurveillance and disaster reporting depend on accuracy and dedication of all involved, for without it, national security and health may be at risk.

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Bibliography “Biosurveillance Priority Areas”. (2007). Department of Human Health and Human Service. Retrieved February 28, 2008, from Blair, R. (2007). Disaster-proof patients. Health Management Technology , 28 (2), 44-47. Retrieved February 27, 2008, from Buisness Source Premier database. Brown, S. H., Fischetti, L. F., Graham, G., Bates, J., Lancaster, A. E., McDaniels, D., et al. (2007). Use of electronic health records in disaster response: The Experience of Department of Veterans Affairs after hurricane Katrina. American Journal of Public Health , 97 (S1), S136-S141. Retrieved February 23, 2008, from Buisness Source Premier database. Brownstein, J. S., & Mandl, K. D. (2006). Reeingineering real time outbreak detection systems for influenza epidemic monitoring. American Medical Informatics Association (p. 866). Washington: AMIA. Buehler, J. W., Isakov, A. P., Prietula, M. J., Smith, D. J., & Whitney, E. A. (2007). Preliminary findings from the BioSense evaluation project. Advances in DIsease Surveillance , 4, 237. English, R., McMurray, P. C., Sokolow, L. Z., Rolka, H., Walker, D., Quinn III, J. F., et al. (2006). Geographic categorization methods used in BioSense. Advances in Disease Surveillance , 1 (24). Grannis, S., Wade, M., Gibson, J., & Overhage, J. M. (2006). The Indiana public health emergency surveillance system: Ongoing progress, early findings, and future directions. AMIA 2006 Symposium Proceedings (pp. 304-308). Washington:

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American Medical Informatics Association. Gundlapalli, A. V., Olson, J., Smith, S. P., Baza, M., Hausam, R., Eutropius, L. J., et al. (2007). Hospital electronic medical record-based public health surveillance system deployed during the 2002 winter Olympic games. American Journal of Infection Control , 35 (3), 163-171. Retrieved February 23, 2008, from Buisness Source Premier database. Klompas, M., Lazarus, R., Daniel, J., Haney, G. A., Campion, F. X., Kruskal, B. A., et al. (2007). Electronic medical record support for public health (ESP): Automatic detection and reporting of statutory notifiable diseases to public health authorities. Advances in Disease Surveillance , 3 (3), 1-5. Retrieved February 26, 2008, from Google Scholar database. Krishna, R., Kelleher, K., & Stalhberg, E. (2007). Patient confidentiality in the research use of clinical medical databases. American Journal of Public Health , 97 (4), 654-658. Retrieved February 25, 2008, from ABI/Inform database. Mack, D., Brantley, K., & Bell, K. G. (2007). Mitigating the health effects of disasters for medically underserved populations: Electronic health records, telemedicine, research, screening and surveillance. Journal of Health Care for the Poor and Underserved , 18, 432-442. Retrieved February 29, 2008, from Project Muse database. Nguyen, T. Q., Thorpe, L., Makki, H., & Mostashari, F. (2007). Benefits and barriers to electronic laboratory results reporting for notifiable diseases: The New York City Department of health and mental hygeine expert. American Journal of Public Health , 97 Olson, K. L., Grannis, S. J., & Mandl, K. D. (2006). Privacy

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protection bersus cluster detection in spatial epidemiology. American Journal of Public Health , 96 (11), 2002-2008. (S1), S142-S145. Retrieved February 23, 2008, from Buisness Source Premier database. Olson, K. L., Grannis, S. J., & Mandl, K. D. (2006). Privacy protection bersus cluster detection in spatial epidemiology. American Journal of Public Health , 96 (11), 2002-2008. Overhage, J. M., Grannis, S., & McDonald, C. J. (2008). A Comparison of the completedness and timeliness of automated electronic laboratory reporting and spontaneous reporting of notifiable conditions. American Journal of Public Health , 98 (2), 344-350. Retrieved February 29, 2008 from Academic Search Premier database.

Appendix View of patient distribution map from BioSense

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Downloaded from

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BioSense map of weekly volume of notifiable diseases from LabCorp Downloaded from

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Clinic system formats data: Data fields>HL7 Lab tests>LOINC Results>SNOMED Diagnoses>ICD-9 Prescription>NDC

Case is identified; system is queried

ICD-9 codes and vital are assessed to determine if case is reportable disease

Y e s

Case is sent to health department and CDC for submission to local and national database

Possible positive s Flow of data from reporting health system to the surveillance system, i.e. Health department, BioSense, etc.

Case management system presents infection control practitioner (ICP) with list of suspected positives

ICP reviews cases behind practice firewall

ICP rejects false positives

ICP sends positives back to ordering clinician, and reports to health department and CDC

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Glossary BioSense- national real-time surveillance system operated by the Centers for Disease Control. Information can be found at Biosurveillance- related to epidemiology; immediate monitoring of public health data preferable through electronic reporting Deidentification- terminology used to describe the process systems use to encrypt patient data in order to comply with HIPPA regulations HL7-Health Level 7 information can be found at ICD-9- International Classification of Diseases information can be found at NDC- National Drug Code directory information can be found at Notifiable diseases- diseases that present a danger to the public and should be immediately reported to public health officials LOINC-Logical Observation Identifiers Names and Codes information can be found at SNOMED or SNOMED-CT- Systemized Nomenclature of Medicine- Clinical Terms information can be found at