Development of a User Driven, Integrated, Communicable Disease Surveillance System

BACKGROUND: A challenge to information technology (IT) projects comes from developers not being users. Requirements must be defined and translated into the language of IT. The Oregon Public Health Division (OPHD) developed a public health information network (PHIN)-compliant reportable disease data system, with epidemiologists the leading partners in development.

METHODS:   A review of communicable disease reporting systems in other states and local health departments (LHDs), participation in CDC requirements gathering sessions, and piloting the CDC NEDSS Base System (NBS), brought the realization that none of these systems would meet OPHD requirements. With in-house experience in FileMaker®Pro and Citrix®-enabled secure access to the database, we built the Oregon Public Health Epi User System (Orpheus). Jurisdiction for investigation of communicable diseases (CDs) rests with LHDs in Oregon. LHD CD investigators collaborated in developing Orpheus’s data-entry interfaces; requirements were identified from a distributed Access® database and several siloed, state-level data systems. Orpheus needed basic data reporting and exporting, contact management, vaccine tracking, reports for accreditation and capacity for ad-hoc epidemiological studies. It needed to consume and process electronic laboratory reports (ELRs) from clinical, national, state, and reference laboratories. Orpheus also needed to satisfy OPHD program management and reporting to CDC. Governance of Orpheus is guided during regular stakeholder meetings. Security policies and procedures outline access by program area and jurisdiction. Quarterly steering committee and state epidemiologist meetings, and a monthly Orpheus user group meeting provide ongoing feedback on new features and bugs. A two-week rapid development cycle ensures timeliness of reqested modifications. The Orpheus on-call “Tech Team” of epidemiologists and analysts supports users on a daily basis. Epidemiologists build and maintain disease templates for existing or emerging pathogens, add new reports, and create custom exports.

RESULTS:   Orpheus integrates current and historic program area data into a unified person-centric system. Sexually transmitted diseases, tuberculosis, general communicable diseases, vaccine preventable diseases, hepatitis, and, most recently, lead poisoning are all managed in Orpheus. ELRs from 21 laboratories are ingested by Orpheus for linkage or creation of new cases. HL7 messages can be generated for reporting to CDC (for TB only at this time).

CONCLUSIONS: The success of Orpheus is due to its foundation by data-savvy epidemiologists. The rapid, ongoing response to feature requests and bugs engages a user group that is now focused on data exploration — analysis of comorbidity, outbreak identification, evaluation of interventions, and program planning.