An Intensive Care Registry in Uganda
To improve the quality of care for patients in intensive care units, we will establish a cloud-based, national intensive care registry led by the Association of Anesthesiologists and the Intensive Care Society of Uganda. Data generated through this longitudinal, but the not time-bound project will allow us to understand the burden and mortality of patients in Uganda who are admitted to intensive care. In addition, it will provide a platform for clinicians on the ground to use in real-time, to influence decision making on the intensive care unit. Based on established software in use in many low- and middle-income countries around the world, the registry will be hosted on physical servers located within Uganda.
An initial, small dataset will be used during the implementation phase to allow the healthcare team to get used to electronic data entry on either tablet or laptop computers.
This will then be expanded based on local needs and further national quality improvement initiatives. It is expected that data points will be incorporated to allow risk adjustment of patients (for example using calculation of illness severity scores) and to measure the quality of intensive care across the domains of structure, process, outcome, access to ICU and patient experience. Data will also be used to understand the role of intensive care in the wider context of healthcare in Uganda and to influence policy and infrastructure expansion in the future.
Intensive care unit, ICU, Critical care, registry
As the Coronavirus disease 2019 (COVID-19) pandemic continues to spread across the world, countries continue to prepare for surges in critically ill patients. In low- and middle-income countries (LMICs) such as Uganda, this has involved reflecting on the current availability of intensive care unit (ICU) beds countrywide and developing strategies to rapidly expand capacity. Establishing an intensive care unit in any setting is expensive and complex. In LMICs, where resources are often constrained, there may be many barriers that impede the optimal care of critically ill patients. Basic amenities such as power, running water and oxygen may not be reliable and supplies of essential medications and consumables may be unpredictable. Despite this myriad of challenges, the demand for ICU remains and clinicians and their teams continue to strive towards providing the best possible care they can.
We are quickly learning that access to healthcare alone, is not enough and that good
quality of care is needed to improve outcomes.1 In LMICs, the ability to capture information to evaluate the quality of care and measure the impact of interventions is often limited.2 In comparison, in high-income countries (HICs) data-driven quality improvement programmes that measure outcomes and benchmark quality indicators, are routinely used to save lives.3 In Uganda, a national ICU registry is needed to enable us to understand current ICU practice and to identify areas that can become a focus to improve the quality of care.
In 2019, Uganda had 55 ICU beds. These were mainly located in the central region and equate to over 100 times fewer than countries such as Italy. COVID-19 has refocused national attention on this critical gap in the healthcare system and efforts are underway to significantly improve ICU capacity in the country. Providing real-time access to data at a facility and individual patient level is a core component of this capability. The Lancet Global Health Commission recently called for investment in systems that strengthen evaluation and improvement, with greater use of data to inform and drive progress.1 In many LMICs, multiple paper-based systems are used to record data making them difficult to access for overworked clinicians on the ground. This in turn leads to clinical care and decision making that is not guided by local epidemiological patterns and evidence.
Cloud-based registries use simple analytical tools to make data interpretable and usable. Interactive, visual dashboards turn raw data into new knowledge in near real-time. This can then be used for both service improvement and to guide clinical care. Examples of such registries are common in many LMICs such as Sri Lanka and Pakistan.4 Establishing a network of ICUs across Uganda that embrace the simple technology in routine use throughout the world, will provide a platform for shared learning. It will accelerate our knowledge of patients that present to intensive care units and strengthen our understanding of the burden of critically ill patients in Uganda.
Establish a national, cloud-based registry that can be used at both a facility level, and nationally, to understand and improve the quality of care for patients admitted to intensive care.
Areas for implementation
Eventually, patients will be included from all intensive care units in Uganda. This will begin with some Regional Referral Hospitals and Mulago National Referral Hospital.
A joint ICU registry is associated with several important advantages for individual health facilities. The shared approach reduces the burden of identifying targets for improvement, selecting appropriate context-specific metrics and of data acquisition and analysis. A single cloud-based system avoids the need for each health facility to invest in duplicated infrastructure resources such as power back up systems, computing hardware (servers) and physical security.
During the initial implementation phase of the ICU registry, the dataset will be kept simple to avoid a sudden large increase in data entry workload that coincides with the introduction of an electronic data entry tool. Over time, driven by local facility needs, it is expected that the registry incorporates data points that, as a minimum, allow an understanding of the following:
Intensive Care Quality
One expected output from the ICU registry is the ability of health facilities to measure the quality of the intensive care they provide. For this reason, the dataset will be developed over time to include indicators that can track the quality of intensive care. This is commonly defined using the following five domains:
- Structure (representing organisation, resources and equipment)
- Process (the process of care between caregiver and patient)
- Outcome (results we achieve at a patient level, ie discharges or mortality)
- Access to intensive care (ability to provide timely and appropriate care)
- Patient experience (this may also include family member’s experiences)
Patients of all ages receive intensive care for a variety of disorders and symptoms. Variations in underlying patient demographics, co-morbidities and disease severity (commonly known as ‘case-mix) can play a significant role in influencing outcomes. Comparison of these outcomes between different centres requires this case-mix to be taken into account, a process known as risk adjustment. In fact, understanding the link between these risk factors and outcomes in critical illness is important for us to advance intensive care. For this reason, a variety of demographic, physiological and medical variables will, over time, be included in the registry dataset.
Health Condition or Problem studied
All patients admitted to intensive care
Gender distribution of participants
The gender distribution of patients is expected to follow the gender distribution of Uganda with equal numbers of males and females.
All patients admitted to intensive care in health facilities in Uganda will be included in the registry.
We will implement an electronic, cloud-based registry co-designed and developed by clinicians in Uganda and similar LMIC settings. With integrated analytics and feedback tools, the registry will encourage the whole healthcare team, including patients and their carers, to interact with information daily and use it to drive improvements in the quality of patient care. Data will be entered into the registry by the regular nursing and medical teams. Where resources allow, a dedicated data entry officer will be employed and tasked with responsibility for data entry.
A central training team led by the Association of Anesthesiologists of Uganda and the Intensive Care Society of Uganda will provide training during the setup and implementation phase. They will then provide remote support for ongoing technical and logistical challenges that occur. The registry is compatible with either handheld tablet computers, laptops or desktops. Each centre will be provided with at least one tablet and one laptop to facilitate data entry.
The primary outcome from this registry will be in-hospital mortality of patients admitted to intensive care with COVID-19.
A series of secondary analyses will be conducted on patients admitted to intensive care. This will include but not be limited to the following: Identifying risk factors that lead to increased severity of disease in patients diagnosed with COVID-19 and admitted to intensive care The mortality rate of all patients admitted to intensive care Mapping the severity of illnesses of patients admitted to intensive care
This is a longitudinal project with no timebound endpoint. Analysis of data will be conducted in two ways. A simple analysis of data entered into the registry will occur in real-time and will be displayed to the user in the form of graphs and charts on an interactive dashboard. This will allow the clinicians on the ground to use the system to improve patient care. These charts and graphical representations of data will be driven by locally identified priorities inpatient care.
Further, a more detailed analysis of data at a local and national level will occur using recognised statistical analysis programmes. Individual statistical analysis plans will be written for these analyses. No patient identifiers will be included in any dataset extracted from the ICU registry. All proposed analyses will be approved by a committee from the Intensive Care Society of Uganda before data extraction and analysis takes place.
As data entry into the ICU registry will form part of the standard care of patients, for example in the calculation of illness severity scores, individual consent will not be sought from patients. Broadcasting signs will be clearly displayed in all ICUs that contribute data to the registry so that patients, family members, staff and visitors are all aware of the ongoing quality improvement initiative.
Individual data points entered into the registry will be treated as part of a patient’s medical record. Access will be restricted to clinicians involved in that patient’s care. Aggregate data and indicators built into the interactive dashboard will not include patient identifiers. Before data is exported for further analysis, patient identifiers will be automatically removed by the system.
Data Storage & Ownership
Data will be stored in an encrypted, cloud-based server with a physical location in Uganda.
Access to the server will be restricted using a role-based system (for example,
administrators will have no access to individual patient information). Access to the system will be provided by a secure, individualised username and password. All-access to the system will be audited and recorded. Data that is entered will be encrypted before being sent to the server via a secure connection following international guidelines for the safe handling of healthcare data. This project complies with Uganda’s Data Protection and Privacy Act, March 2019 edition.
Data from each health facility entered into the system is owned by that facility. Clinicians from one hospital will not be able to access patient data from another health facility.
Community Engagement Plan
Intensive care registries facilitate discussion and learning by providing access to data and reports that display relevant comparisons between participating ICUs. An environment of openness and sharing of information has a powerful influence on the delivery of high-quality care. This willingness to measure and share results, even when they are suboptimal needs a carefully planned communication strategy. This ensures that the context of any reports is fully understood by all who read them. We will work closely with the Ministry of Health (MoH) and with individual health facilities and their management teams to provide education on how the ICU registry can be used to their advantage to improve patient care. In addition, we will provide professional guidance to the MoH teams to enable them to share trends and successes with the wider media community. Community engagement will occur at an individual patient level with patients and their families being involved in shared decision making. This routine component of intensive care medicine will be enhanced by the real-time data that will be made available by our ICU registry.
Publication and dissemination of results
Data will be available for health facilities in real-time. In addition, data that is aggregated and analysed at a national level will be made available in the form of a report for the Ministry of Health. Additional, data-driven quality improvement initiatives will lead to results that will be shared throughout the ICU network. If data is to be analysed and used in any future presentations or publications, prior approval will be sought from each health facility and clearance will be sought from Uganda National Council for Science and Technology.
- Kruk ME, Gage AD, Arsenault C, et al. High-quality health systems in the Sustainable Development Goals era: time for a revolution. Lancet Glob Health 2018; 6: e1196–252
- Beane A, Wagstaff D, Abayadeera A, et al. A learning health systems approach to improving the quality of care for patients in South Asia. Global Health Action 2019; 12:1587893
- Oliver CM, Bassett MG, Poulton TE, et al. Organisational factors and mortality after an emergency laparotomy: a multilevel analysis of 39 903 National Emergency Laparotomy Audit patients. Br J Anaesth 2018; 121: 1346–56
- Beane A, De Silva AP, Athapattu PL, et al. Addressing the information deficit in global health: lessons from a digital acute care platform in Sri Lanka. BMJ Glob Health 2019;4: e001134