Improving health information systems during an emergency: lessons and recommendations from an Ebola treatment centre in Sierra Leone.

BACKGROUND: 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) 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. METHODS: We 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. RESULTS: Some 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. CONCLUSIONS: HISs 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.

Symptom- and Laboratory-Based Ebola Risk Scores to Differentiate Likely Ebola Infections.

Rapidly identifying likely Ebola patients is difficult because of a broad case definition, overlap of symptoms with common illnesses, and lack of rapid diagnostics. However, rapid identification is critical for care and containment of contagion. We analyzed retrospective data from 252 Ebola-positive and 172 Ebola-negative patients at a Sierra Leone Ebola treatment center to develop easy-to-use risk scores, based on symptoms and laboratory tests (if available), to stratify triaged patients by their likelihood of having Ebola infection. Headache, diarrhea, difficulty breathing, nausea/vomiting, loss of appetite, and conjunctivitis comprised the symptom-based score. The laboratory-based score also included creatinine, creatine kinase, alanine aminotransferase, and total bilirubin. This risk score correctly identified 92% of Ebola-positive patients as high risk for infection; both scores correctly classified >70% of Ebola-negative patients as low or medium risk. Clinicians can use these risk scores to gauge the likelihood of triaged patients having Ebola while awaiting laboratory confirmation.

Development and Deployment of the OpenMRS-Ebola Electronic Health Record System for an Ebola Treatment Center in Sierra Leone.

BACKGROUND: Stringent infection control requirements at Ebola treatment centers (ETCs), which are specialized facilities for isolating and treating Ebola patients, create substantial challenges for recording and reviewing patient information. During the 2014-2016 West African Ebola epidemic, paper-based data collection systems at ETCs compromised the quality, quantity, and confidentiality of patient data. Electronic health record (EHR) systems have the potential to address such problems, with benefits for patient care, surveillance, and research. However, no suitable software was available for deployment when large-scale ETCs opened as the epidemic escalated in 2014. OBJECTIVE: We present our work on rapidly developing and deploying OpenMRS-Ebola, an EHR system for the Kerry Town ETC in Sierra Leone. We describe our experience, lessons learned, and recommendations for future health emergencies. METHODS: We used the OpenMRS platform and Agile software development approaches to build OpenMRS-Ebola. Key features of our work included daily communications between the development team and ground-based operations team, iterative processes, and phased development and implementation. We made design decisions based on the restrictions of the ETC environment and regular user feedback. To evaluate the system, we conducted predeployment user questionnaires and compared the EHR records with duplicate paper records. RESULTS: We successfully built OpenMRS-Ebola, a modular stand-alone EHR system with a tablet-based application for infectious patient wards and a desktop-based application for noninfectious areas. OpenMRS-Ebola supports patient tracking (registration, bed allocation, and discharge); recording of vital signs and symptoms; medication and intravenous fluid ordering and monitoring; laboratory results; clinician notes; and data export. It displays relevant patient information to clinicians in infectious and noninfectious zones. We implemented phase 1 (patient tracking; drug ordering and monitoring) after 2.5 months of full-time development. OpenMRS-Ebola was used for 112 patient registrations, 569 prescription orders, and 971 medication administration recordings. We were unable to fully implement phases 2 and 3 as the ETC closed because of a decrease in new Ebola cases. The phase 1 evaluation suggested that OpenMRS-Ebola worked well in the context of the rollout, and the user feedback was positive. CONCLUSIONS: To our knowledge, OpenMRS-Ebola is the most comprehensive adaptable clinical EHR built for a low-resource setting health emergency. It is designed to address the main challenges of data collection in highly infectious environments that require robust infection prevention and control measures and it is interoperable with other electronic health systems. Although we built and deployed OpenMRS-Ebola more rapidly than typical software, our work highlights the challenges of having to develop an appropriate system during an emergency rather than being able to rapidly adapt an existing one. Lessons learned from this and previous emergencies should be used to ensure that a set of well-designed, easy-to-use, pretested health software is ready for quick deployment in future.

Improving humanitarian health responses for children through nurturing care.

Children are disproportionately impacted by humanitarian disasters, which cause toxic stress. When a crisis overwhelms the capacity of health and social systems to meet the needs of a population, external crisis response teams working in a range of sectors may offer support to save lives and meet the affected populations' basic needs. Gaps have been identified in health sector interventions for children in humanitarian contexts, including lack of routine interventions to protect and promote early child development (ECD). To address this gap and improve the quality of humanitarian responses for girls and boys, the Global Health Cluster, Child Health Task Force, and the Inter-Agency Network for Education in Emergencies held a webinar series on Strengthening Nurturing Care in Humanitarian Response. It concluded that incorporating interventions to support nurturing care for ECD into health responses in acute phase emergencies is lifesaving. In crisis contexts, even simple interventions can be the difference between life and death, and when systematically applied, they can dramatically improve a child's life opportunities as well as national recovery and economic growth.

Measuring supply-side service disruption: a systematic review of the methods for measuring disruption in the context of maternal and newborn health services in low and middle-income settings.

OBJECTIVES: During the COVID-19 pandemic, most essential services experienced some level of disruption. Disruption in LMICs was more severe than in HICs. Early reports suggested that services for maternal and newborn health were disproportionately affected, raising concerns about health equity. Most disruption indicators measure demand-side disruption, or they conflate demand-side and supply-side disruption. There is currently no published guidance on measuring supply-side disruption. The primary objective of this review was to identify methods and approaches used to measure supply-side service disruptions to maternal and newborn health services in the context of COVID-19. DESIGN: We carried out a systematic review and have created a typology of measurement methods and approaches using narrative synthesis. DATA SOURCES: We searched MEDLINE, EMBASE and Global Health in January 2023. We also searched the grey literature. ELIGIBILITY CRITERIA: We included empirical studies describing the measurement of supply-side service disruption of maternal and newborn health services in LMICs in the context of COVID-19. DATA EXTRACTION AND SYNTHESIS: We extracted the aim, method(s), setting, and study outcome(s) from included studies. We synthesised findings by type of measure (ie, provision or quality of services) and methodological approach (ie, qualitative or quantitative). RESULTS: We identified 28 studies describing 5 approaches to measuring supply-side disruption: (1) cross-sectional surveys of the nature and experience of supply-side disruption, (2) surveys to measure temporal changes in service provision or quality, (3) surveys to create composite disruption scores, (4) surveys of service users to measure receipt of services, and (5) clinical observation of the provision and quality of services. CONCLUSION: Our review identified methods and approaches for measuring supply-side service disruption of maternal and newborn health services. These indicators provide important information about the causes and extent of supply-side disruption and provide a useful starting point for developing specific guidance on the measurement of service disruption in LMICs.

Community-based surveillance of infectious diseases: a systematic review of drivers of success.

INTRODUCTION: Community-based surveillance may improve early detection and response to disease outbreaks by leveraging the capacity of community members to carry out surveillance activities within their communities. In 2021, the WHO published a report detailing the evidence gaps and research priorities around community-centred approaches to health emergencies. In response, we carried out a systematic review and narrative synthesis of the evidence describing the drivers of success of community-based surveillance systems. METHODS: We included grey literature and peer-reviewed sources presenting empirical findings of the drivers of success of community-based surveillance systems for the detection and reporting of infectious disease-related events. We searched for peer-reviewed literature via MEDLINE, EMBASE, Global Health, SCOPUS and ReliefWeb. We carried out grey literature searches using Google Search and DuckDuckGo. We used an evaluation quality checklist to assess quality. RESULTS: Nineteen sources (17 peer-reviewed and 2 grey literature) met our inclusion criteria. Included sources reported on community-based surveillance for the detection and reporting of a variety of diseases in 15 countries (including three conflict settings). The drivers of success were grouped based on factors relating to: (1) surveillance workers, (2) the community, (3) case detection and reporting, (4) and integration. DISCUSSION: The drivers of success were found to map closely to principles of participatory community engagement with success factors reflecting high levels of acceptability, collaboration, communication, local ownership, and trust. Other factors included: strong supervision and training, a strong sense of responsibility for community health, effective engagement of community informants, close proximity of surveillance workers to communities, the use of simple and adaptable case definitions, quality assurance, effective use of technology, and the use of data for real-time decision-making. Our findings highlight strategies for improving the design and implementation of community-based surveillance. We suggest that investment in participatory community engagement more broadly may be a key surveillance preparedness activity. PROSPERO REGISTRATION NUMBER: CRD42022303971.

COVID-19 testing acceptability and uptake amongst the Rohingya and host community in Camp 21, Teknaf, Bangladesh.

Facility-based sentinel testing for COVID-19 was implemented in May 2020 to monitor the prevalence of COVID-19 amongst the Rohingya and host community in Cox's Bazar, Bangladesh. In response both to low uptake of testing across all camps, and rumours of an outbreak of an influenza-like illness in May/June 2020, the International Organization for Migration (in partnership with ACAPS) undertook a qualitative study to collect accounts from the Rohingya relating to testing and treatment, and to explore the possibility that what was thought to be an outbreak of influenza may have been COVID-19. The report provided rich descriptions of the apprehension around testing and offered some clear recommendations for addressing these. We developed a testing 'script' in response to these recommendations, deploying it alongside a survey to determine reasons for declining a test. We compared testing uptake before deploying the testing script, and after (controlling for the total number of consultations), to generate a crude measure of the impact of the script on testing uptake. We coded reasons for declining a test thematically, disaggregated by status (Rohingya and host community) and sex. Despite the small sample size our results suggest an increase in testing uptake following the implementation of the script. Reasons provided by patients for declining a test included: 1) fear, 2) the belief that COVID-19 does not exist, that Allah will prevent them from contracting it, or that their symptoms are not caused by COVID-19, 3) no permission from husband/family, and 4) a preference to return at a later time for a test. Our findings largely mirror the qualitative accounts in the International Organization for Migration/ACAPS report and suggest that further testing amongst both populations will be complicated by fear, and a lack of clarity around testing. Our data lend force to the recommendations in the International Organization for Migration/ACAPS report and emphasise that contextual factors play a key role and must be considered in designing and implementing a health response to a novel disease.

Preparing humanitarians to address ethical problems.

Infectious disease outbreaks represent potentially catastrophic threats to those affected by humanitarian crises. High transmissibility, crowded living conditions, widespread co-morbidities, and a lack of intensive care capacity may amplify the effects of the outbreak on already vulnerable populations and present humanitarian actors with intense ethical problems. We argue that there are significant and troubling gaps in ethical awareness at the level of humanitarian praxis. Though some ethical guidance does exist most of it is directed at public health experts and fails to speak to the day-to-day ethical challenges confronted by frontline humanitarians. In responding to infectious disease outbreaks humanitarian workers are likely to grapple with complex dilemmas opening the door to moral distress and burnout.

Mobile clinics in humanitarian emergencies: a systematic review.

BACKGROUND: Despite the widespread reliance on mobile clinics for delivering health services in humanitarian emergencies there is little empirical evidence to support their use. We report a narrative systematic review of the empirical evidence evaluating the use of mobile clinics in humanitarian settings. METHODS: We searched MEDLINE, EMBASE, Global Health, Health Management Information Consortium, and The Cochrane Library for manuscripts published between 2000 and 2019. We also conducted a grey literature search via Global Health, Open Grey, and the WHO publication database. Empirical studies were included if they reported on at least one of the following evaluation criteria: relevance/appropriateness, connectedness, coherence, coverage, efficiency, effectiveness, and impact. FINDINGS: Five studies met the inclusion criteria: all supported the use of mobile clinics in the particular setting under study. Three studies included controls. Two studies were assessed as good quality. The studies reported on mobile clinics providing non-communicable disease interventions, mental health services, sexual and reproductive health services, and multiple primary health care services in Afghanistan, the Democratic Republic of the Congo , Haiti, and the Occupied Palestinian Territories. Studies assessed one or more of the following evaluation domains: relevance/appropriateness, coverage, efficiency, and effectiveness. Four studies made recommendations including: i) ensure that mobile clinics are designed to complement clinic-based services; ii) improve technological tools to support patient follow-up, improve record-keeping, communication, and coordination; iii) avoid labelling services in a way that might stigmatise attendees; iv) strengthen referral to psychosocial and mental health services; v) partner with local providers to leverage resources; and vi) ensure strong coordination to optimise the continuum of care. Recommendations regarding the evaluation of mobile clinics include carrying out comparative studies of various modalities (including fixed facilities and community health workers) in order to isolate the effects of the mobile clinics. In the absence of a sound evidence base informing the use of mobile clinics in humanitarian crises, we encourage the integration of: i) WASH services, ii) nutrition services, iii) epidemic surveillance, and iv) systems to ensure the quality and safety of patient care. We recommend that future evaluations report against an established evaluation framework. CONCLUSION: Evidence supporting the use of mobile clinics in humanitarian emergencies is limited. We encourage more studies of the use of mobile clinics in emergency settings. FUNDING: Salary support for this review was provided under the RECAP project by United Kingdom Research and Innovation as part of the Global Challenges Research Fund, grant number ES/P010873/1.

A graphic elicitation technique to represent patient rights.

BACKGROUND: A patient charter is an explicit declaration of the rights of patients within a particular health care setting. In early 2020 the Save the Children Emergency Health Unit deployed to Cox's Bazar Bangladesh to support the establishment of a severe acute respiratory infection isolation and treatment centre as part of the COVID-19 response. We developed a charter of patient rights and had it translated into Bangla and Burmese; however, the charter remained inaccessible to Rohingya and members of the host community with low literacy. METHODS: To both visualise and contextualise the patient charter we undertook a graphic elicitation method involving both the Rohingya and host communities. We carried out two focus group discussions during which we discussed the charter and agreed how best to illustrate the individual rights contained therein. RESULTS: Logistical constraints and infection prevention and control procedures limited our ability to follow up with the original focus group participants and to engage in back-translation as we had planned; however, we were able to elicit rich descriptions of each right. Reflecting on our method we were able to identify several key learnings relating to: 1) our technique for eliciting feedback on the charter verbatim versus a broader discussion of concepts referenced within each right, 2) our decision to include both men and women in the same focus group, 3) our decision to ask focus group participants to describe specific features of each illustration and how this benefited the inclusivity of our illustrations, and 4) the potential of the focus groups to act as a means to introduce the charter to communities. CONCLUSIONS: Though executing our method was operationally challenging we were able to create culturally appropriate illustrations to accompany our patient charter. In contexts of limited literacy it is possible to enable access to critical clinical governance and accountability tools.

Surviving Ebola: A historical cohort study of Ebola mortality and survival in Sierra Leone 2014-2015.

BACKGROUND: While a number of predictors for Ebola mortality have been identified, less is known about post-viral symptoms. The identification of acute-illness predictors for post-viral symptoms could allow the selection of patients for more active follow up in the future, and those in whom early interventions may be beneficial in the long term. Studying predictors of both mortality and post-viral symptoms within a single cohort of patients could also further our understanding of the pathophysiology of survivor sequelae. METHODS/PRINCIPAL FINDINGS: We performed a historical cohort study using data collected as part of routine clinical care from an Ebola Treatment Centre (ETC) in Kerry Town, Sierra Leone, in order to identify predictors of mortality and of post-viral symptoms. Variables included as potential predictors were sex, age, date of admission, first recorded viral load at the ETC and symptoms (recorded upon presentation at the ETC). Multivariable logistic regression was used to identify predictors. Of 263 Ebola-confirmed patients admitted between November 2014 and March 2015, 151 (57%) survived to ETC discharge. Viral load was the strongest predictor of mortality (adjusted OR comparing high with low viral load: 84.97, 95% CI 30.87-345.94). We did not find evidence that a high viral load predicted post-viral symptoms (ocular: 1.17, 95% CI 0.35-3.97; musculoskeletal: 1.07, 95% CI 0.28-4.08). Ocular post-viral symptoms were more common in females (2.31, 95% CI 0.98-5.43) and in those who had experienced hiccups during the acute phase (4.73, 95% CI 0.90-24.73). CONCLUSIONS/SIGNIFICANCE: These findings may add epidemiological support to the hypothesis that post-viral symptoms have an immune-mediated aspect and may not only be a consequence of high viral load and disease severity.

The role of public health information in assistance to populations living in opposition and contested areas of Syria, 2012-2014.

BACKGROUND: The Syrian armed conflict is the worst humanitarian tragedy this century. With approximately 470,000 deaths and more than 13 million people displaced, the conflict continues to have a devastating impact on the health system and health outcomes within the country. Hundreds of international and national non-governmental organisations, as well as United Nations agencies have responded to the humanitarian crisis in Syria. While there has been significant attention on the challenges of meeting health needs of Syrian refugees in neighbouring countries such as Jordan, Lebanon and Turkey, very little has been documented about the humanitarian challenges within Syria, between 2013 and 2014 when non-governmental organisations operated in Syria with very little United Nations support or leadership, particularly around obtaining information to guide health responses in Syria. METHODS: In this study, we draw on our operational experience in Syria and analyse data collected for the humanitarian health response in contested and opposition-held areas of Syria in 2013-4 from Turkey, where the largest humanitarian operation for Syria was based. This is combined with academic literature and material from open-access reports. RESULTS: Humanitarian needs have consistently been most acute in contested and opposition-held areas of Syria due to break-down of Government of Syria services and intense warfare. Humanitarian organisations had to establish de novo data collection systems independent of the Government of Syria to provide essential services in opposition-held and contested areas of Syria. The use of technology such as social media was vital to facilitating remote data collection in Syria as many humanitarian agencies operated with a limited operational visibility given chronic levels of insecurity. Mortality data have been highly politicized and extremely difficult to verify, particularly in areas highly affected by the conflict, with shifting frontlines, populations, and allegiances. CONCLUSIONS: More investment in data collection and use, technological investment in the use of M- and E-health, capacity building and strong technical and independent leadership should be a key priority for the humanitarian health response in Syria and other emergencies. Much more attention should be also given for the treatment gap for non-communicable diseases including mental disorders.

Exploring the influence of the Global Fund and the GAVI Alliance on health systems in conflict-affected countries.

BACKGROUND: Global Health Initiatives (GHIs) respond to high-impact communicable diseases in resource-poor countries, including health systems support, and are major actors in global health. GHIs could play an important role in countries affected by armed conflict given these countries commonly have weak health systems and a high burden of communicable disease. The aim of this study is to explore the influence of two leading GHIs, the Global Fund and the GAVI Alliance, on the health systems of conflict-affected countries. METHODS: This study used an analytical review approach to identify evidence on the role of the Global Fund and the GAVI Alliance with regards to health systems support to 19 conflict-affected countries. Primary and secondary published and grey literature were used, including country evaluations from the Global Fund and the GAVI Alliance. The WHO heath systems building blocks framework was used for the analysis. RESULTS: There is a limited evidence-base on the influence of GHIs on health systems of conflict-affected countries. The findings suggest that GHIs are increasingly investing in conflict-affected countries which has helped to rapidly scale up health services, strengthen human resources, improve procurement, and develop guidelines and protocols. Negative influences include distorting priorities within the health system, inequitable financing of disease-specific services over other health services, diverting staff away from more essential health care services, inadequate attention to capacity building, burdensome reporting requirements, and limited flexibility and responsiveness to the contextual challenges of conflict-affected countries. CONCLUSIONS: There is some evidence of increasing engagement of the Global Fund and the GAVI Alliance with health systems in conflict-affected countries, but this engagement should be supported by more context-specific policies and approaches.

Clinical presentation, biochemical, and haematological parameters and their association with outcome in patients with Ebola virus disease: an observational cohort study.

BACKGROUND: Clinical management of Ebola virus disease remains challenging. Routine laboratory analytics are often unavailable in the outbreak setting, and few data exist for the associated haematological and biochemical abnormalities. We aimed to assess laboratory and clinical data from patients with Ebola virus disease to better inform clinical management algorithms, improve understanding of key variables associated with outcome, and provide insight into the pathophysiology of Ebola virus disease. METHODS: We recruited all patients, alive on arrival, with confirmed Ebola virus disease who were admitted to the Kerry Town Ebola treatment centre in Sierra Leone. At admission, all patients had clinical presentation recorded and blood taken for Ebola confirmation using reverse-transcriptase-PCR (RT-PCR) and for haematological and biochemical analysis. We studied the association between these and clinical outcome. The primary outcome was discharge from the Ebola treatment centre. FINDINGS: 150 patients were admitted to the treatment centre between Dec 8, 2014, and Jan 9, 2015. The mean age of patients was 26 years (SD 14·7). Case fatality rate was 37% (55/150). Most patients presented with stage 2 (gastrointestinal involvement, 72/118 [61%]) and stage 3 (severe or complicated, 12/118 [10%]) disease. Acute kidney injury was common (52/104 [50%]), as were abnormal serum potassium (32/97 [33%]), severe hepatitis (54/92 [59%]), and raised C-reactive protein (21/100 [21%]). Haematological abnormalities were common, including raised haematocrit (15/100 [15%]), thrombocytopenia (47/104 [45%]), and granulocytosis (44/104 [42%]). Severe acute kidney injury, low RT-PCR cycle threshold (<20 cycles), and severe hepatitis were independently associated with mortality. INTERPRETATION: Ebola virus disease is associated with a high prevalence of haematological and biochemical abnormalities, even in mild disease and in the absence of gastrointestinal symptoms. Clinical care that targets hypovolaemia, electrolyte disturbance, and acute kidney injury is likely to reduce historically high case fatality rates. FUNDING: None.