Overview of the ICU Registry

A registry is an organized system that uses observational study methods to collect uniform data to evaluate specific outcomes, to establish databases, to conduct further studies and to improve quality. ICU data registry is recording information about patients during admission, health care they receive, their prognosis and outcome during ICU stay.

Main goals are:

• To assess the ICU capacity in terms of logistics, infrastructure, and human resources
• To introduce an electronic ICU registry
• To assess the quality of existing care in ICU, using quantitative and qualitative methods
• To describe resource utilization in terms of staffing, patient acuity, specific treatments
• To support policy decision-making to better utilize existing intensive care resources, further expansion of acute care facilities, plan allocation of resources
• To identify areas that required quality improvement initiatives to improve outcomes
• To provide a benchmark to compare performance
• To trigger registry-based research in acute and critical care

Benefits of participation

• ICU registries facilitate the identification of best practices for improving patient care.
• Participation aids in evaluating the effectiveness of various treatments and interventions.
• Valuable data from registries supports a wide array of medical research and clinical trials.
• Registries assist in optimizing resource allocation within participating ICUs.
• Risk stratification models derived from registry data enable proactive patient care.
• Standardized protocols developed from registry insights promote consistency in care delivery.
• Collaboration among ICUs through registries enhances knowledge sharing and professional networking.
• Reporting of ICU metrics promotes transparency and accountability in healthcare.
• Tracking long-term outcomes aids in understanding patient recovery beyond the ICU stay.
• Participation in registries can help ICUs meet regulatory standards and achieve accreditation.

How to participate

A formal approval letter from Hospital authority will be obtained before the data collection. Technical support for the registry will be provided by NICRF. The registry is adapted from a successful clinician co-designed ICU registry from Asian Critical Care network. The patient’s data will be entered to a well-designed server. The server decodes the data during data analysis and the anonymity of the patient will be maintained. The data collection process will start from the admission of the patient and the data of the patient will be entered daily till the date the patient is discharged. The local data collectors appointed by the hospital will be responsible for the patient’s data entry in the server. The collected data will be the property of the particular institution itself. Contributing sites have full access to all data submitted from their unit but do not have access to raw data submitted by other contributing units. The data will be password protected and will be restricted to authorized personnel only. The collected data will be stored in secure servers and access is curated. Data will be housed in the server of NICRF, hosted locally. De-identified analyzed data may be shared with foreign collaborators for comparison and benchmarking across registries in South-East Asia. The MORU team based in Sri Lanka curating the NICS registry will provide further technical support for the registry. Data validation comprises automated rules incorporated in the database, on-site checks and remote checks by the central team. Daily data capture and visual display of information facilitates checks on data accuracy and completeness by the implementation officer and data collector. Checks are subsequently also performed centrally by the project team, who will monitor data entry daily aided by automated scripts. Queries will be sent back to the sites, which will be addressed by the data collector and implementation officer and overseen by the national coordinator. Errors, edits and validation queries generated in the registry will be stored separately, so that common errors can be identified and be acted on. NICRF will coordinate the workflow of the registry.

Data privacy and compliance

Data will be stored in a secure server provided by NICRF. The data storage facility will have 24 x 7 securities and access to data will be restricted to the authorized personnel only. Data will be password protected and users will have access to their institution. Each ICU will only be able to review and export their own unit’s data. Only data validators will have access to the aggregate data, but this will be restricted to information that is essential for purposes of validation and will be restricted to current inpatients with no access to legacy data. Data will be locally held. It will not be incorporated into data banks abroad. The collaborative network, led by Nepal Intensive Care Research Foundation, and with the support of Wellcome and Mahidol Oxford Tropical Medicine Research Unit will provide resources, training and academic supervision to healthcare workers seeking to improve care for critically unwell patients using a model of registry implementation, data-driven evaluation of routine care, and improvement through implementation science and research. Further information on support from NICRF is detailed in MOU attached along this letter. We are excited to work with long-standing collaborators and forge new partnerships with those seeking to improve acute and critical care in the region. We look forward to welcoming you to the network.