Abstract
BackgroundThe 2014–2016 West Africa Ebola epidemic highlighted the difficulty of collecting patient information during emergencies, especially in highly infectious environments. Health information systems (HISs) appropriate for such settings were lacking prior to this outbreak. Here we describe our development and implementation of paper and electronic HISs at the Sierra Leone Kerry Town Ebola treatment centre (ETC) from 2014 to 2015. We share our approach, experiences, and recommendations for future health emergencies.MethodsWe developed eight fact-finding questions about data-related needs, priorities, and restrictions at the ETC (“inputs”) to inform eight structural decisions (“outputs”) across six core HIS components. Semi-structured interviews about the “inputs” were then conducted with HIS stakeholders, chosen based on their teams’ involvement in ETC HIS-related activities. Their responses were used to formulate the “output” results to guide the HIS design. We implemented the HIS using an Agile approach, monitored system usage, and developed a structured questionnaire on user experiences and opinions.ResultsSome key “input” responses were: 1) data needs for priorities (patient care, mandatory reporting); 2) challenges around infection control, limited equipment, and staff clinical/language proficiencies; 3) patient/clinical flows; and 4) weak points from staff turnover, infection control, and changing protocols. Key outputs included: 1) determining essential data, 2) data tool design decisions (e.g. large font sizes, checkboxes/buttons), 3) data communication methods (e.g. radio, “collective memory”), 4) error reduction methods (e.g. check digits, pre-written wristbands), and 5) data storage options (e.g. encrypted files, accessible folders). Implementation involved building data collection tools (e.g. 13 forms), preparing the systems (e.g. supplies), training staff, and maintenance (e.g. removing old forms). Most patients had basic (100%, n = 456/456), drug (96.9%, n = 442/456), and additional clinical/epidemiological (98.9%, n = 451/456) data stored. The questionnaire responses highlighted the importance of usability and simplicity in the HIS.ConclusionsHISs during emergencies are often ad-hoc and disjointed, but systematic design and implementation can lead to high-quality systems focused on efficiency and ease of use. Many of the processes used and lessons learned from our work are generalizable to other health emergencies. Improvements should be started now to have rapidly adaptable and deployable HISs ready for the next health emergency.
Highlights
The 2014–2016 West Africa Ebola epidemic highlighted the difficulty of collecting patient information during emergencies, especially in highly infectious environments
Review of existing data collection solutions We found no publication with guidance on designing an overall Health information system (HIS) for Ebola or other viral hemorrhagic fever
Buhler et al discussed red to green zone communication methods [12], and some previous clinical publications noted the need for quality data collection [13, 14]
Summary
The 2014–2016 West Africa Ebola epidemic highlighted the difficulty of collecting patient information during emergencies, especially in highly infectious environments. Health information systems (HISs) are needed to support patient care and to help coordinate the overall response. There are, several benefits to having a well-functioning HIS during a large-scale outbreak Such a system makes patient care more efficient and accurate [2]. For diseases with a scant evidence base such as Ebola, patient data are essential for clinical trials and understanding prognostic factors for survival [3]. Even basic questions, such as the importance of intravenous (IV) fluids for survival, were hotly debated during this outbreak [4]. Producible patient data summaries are needed for staff and resource management, as well as for external monitoring and surveillance
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