Jennifer L. Williams

Most public health agencies expect reporting of diseases to be initiated by hospital, laboratory or clinic staff even though so-called passive approaches are known to be burdensome for reporters and produce incomplete as well as delayed reports, which can hinder assessment of disease and delay recognition of outbreaks. In this study, we analyze patterns of reporting as well as data completeness and timeliness for traditional, passive reporting of notifiable disease by two distinct sources of information: hospital and clinic staff versus clinical laboratory staff. Reports were submitted via fax machine as well as electronic health information exchange interfaces. Data were extracted from all submitted notifiable disease reports for seven representative diseases. Reporting rates are the proportion of known cases having a corresponding case report from a provider, a faxed laboratory report or an electronic laboratory report. Reporting rates were stratified by disease and compared using McNemar’s test. For key data fields on the reports, completeness was calculated as the proportion of non-blank fields. Timeliness was measured as the difference between date of laboratory confirmed diagnosis and the date the report was received by the health department. Differences in completeness and timeliness by data source were evaluated using a generalized linear model with Pearson’s goodness of fit statistic. We assessed 13,269 reports representing 9034 unique cases. Reporting rates varied by disease with overall rates of 19.1% for providers and 84.4% for laboratories (p < 0.001). All but three of 15 data fields in provider reports were more often complete than those fields within laboratory reports (p <0.001). Laboratory reports, whether faxed or electronically sent, were received, on average, 2.2 days after diagnosis versus a week for provider reports (p <0.001). Despite growth in the use of electronic methods to enhance notifiable disease reporting, there still exists much room for improvement.

Introduction: Surveillance, or the systematic monitoring of disease within a population, is a cornerstone function of public health. Despite significant investment in information technologies (IT) to improve the public’s health, health care providers continue to rely on manual, spontaneous reporting processes that can result in incomplete and delayed surveillance activities.Background: Participatory design principles advocate including real users and stakeholders when designing an information system to ensure high ecological validity of the product, incorporate relevance and context into the design, reduce misconceptions designers can make due to insufficient domain expertise, and ultimately reduce barriers to adoption of the system. This paper focuses on the collaborative and informal participatory design process used to develop enhanced, IT-enabled reporting processes that leverage available electronic health records in a health information exchange to prepopulate notifiable-conditions report forms used by public health authorities.Methods: Over nine months, public health stakeholders, technical staff, and informatics researchers were engaged in a multiphase participatory design process that included public health stakeholder focus groups, investigator-engineering team meetings, public health survey and census regarding high-priority data elements, and codesign of exploratory prototypes and final form mock-ups.Findings: A number of state-mandated report fields that are not highly used or desirable for disease investigation were eliminated, which allowed engineers to repurpose form space for desired and high-priority data elements and improve the usability of the forms. Our participatory design process ensured that IT development was driven by end user expertise and needs, resulting in significant improvements to the layout and functionality of the reporting forms.Discussion: In addition to informing report form development, engaging with public health end users and stakeholders through the participatory design process provided new insights into public health workflow and allowed the team to quickly triage user requests while managing user expectations within the realm of engineering possibilities.Conclusion: Engaging public health, engineering staff, and investigators in a shared codesigning process ensured that the new forms will not only meet real-life needs but will also support development of a product that will be adopted and, ultimately, improve communicable and infectious disease reporting by clinicians to public health.