Electronic Data Capture System (REDCap) for Health Care Research and Training in a Resource-Constrained Environment: Technology Adoption Case Study.

BACKGROUND: Electronic data capture (EDC) in academic health care organizations provides an opportunity for the management, aggregation, and secondary use of research and clinical data. It is especially important in resource-constrained environments such as the South African public health care sector, where paper records are still the main form of clinical record keeping. OBJECTIVE: The aim of this study was to describe the strategies followed by the University of the Witwatersrand Faculty of Health Sciences (Wits FHS) during the period from 2013 to 2021 to overcome resistance to, and encourage the adoption of, the REDCap (Research Electronic Data Capture; Vanderbilt University) system by academic and clinical staff. REDCap has found wide use in varying domains, including clinical studies and research projects as well as administrative, financial, and human resource applications. Given REDCap's global footprint in >5000 institutions worldwide and potential for future growth, the strategies followed by the Wits FHS to support users and encourage adoption may be of importance to others using the system, particularly in resource-constrained settings. METHODS: The strategies to support users and encourage adoption included top-down organizational support; secure and reliable application, hosting infrastructure, and systems administration; an enabling and accessible REDCap support team; regular hands-on training workshops covering REDCap project setup and data collection instrument design techniques; annual local symposia to promote networking and awareness of all the latest software features and best practices for using them; participation in REDCap Consortium activities; and regular and ongoing mentorship from members of the Vanderbilt University Medical Center. RESULTS: During the period from 2013 to 2021, the use of the REDCap EDC system by individuals at the Wits FHS increased, respectively, from 129 active user accounts to 3447 active user accounts. The number of REDCap projects increased from 149 in 2013 to 12,865 in 2021. REDCap at Wits also supported various publications and research outputs, including journal articles and postgraduate monographs. As of 2020, a total of 233 journal articles and 87 postgraduate monographs acknowledged the use of the Wits REDCap system. CONCLUSIONS: By providing reliable infrastructure and accessible support resources, we were able to successfully implement and grow the REDCap EDC system at the Wits FHS and its associated academic medical centers. We believe that the increase in the use of REDCap was driven by offering a dependable, secure service with a strong end-user training and support model. This model may be applied by other academic and health care organizations in resource-constrained environments planning to implement EDC technology.

Human Leukocyte Antigen Typing with Sequence Specific Oligonucleotides for Renal Transplantation in South Africa.

BACKGROUND: Kidney transplants are the only curative therapeutic intervention for end-stage kidney disease (ESKD). The current organ shortage in South Africa makes recipient risk assessments and effective laboratory workup crucial to assist in better organ assignment and increase the likelihood of better transplant outcomes. HLA typing is a step in the pre-transplant workup for performing virtual crossmatches and matching donors and recipients. Sequence Specific Oligonucleotide (SSO) PCR is a relatively fast and inexpensive method for determining genotypic HLA types at a 2- to 4-digit resolution. This study aimed to validate the SSO technique for achieving a 4-digit resolution when determining HLA types to improve virtual crossmatches. METHODS: DNA was extracted from 33 samples. After PCR amplification, the samples were hybridized to oligonu-cleotide probes and the HLA A, B, C, DRB1, DQA1/B1, DRB3, DRB4, DRB5, and DPA1/B1 types were identified. These results were compared to results from external laboratories. RESULTS: The kappa coefficient calculated for the low-resolution comparison suggested a perfect agreement between the two results (p = 0.32). CONCLUSIONS: SSO was successfully validated for HLA typing in the Johannesburg kidney transplant setting. This will improve the specificity of virtual crossmatches on an automated system by matching the resolution of the HLA typing and the HLA antibody testing. Additionally, common HLA types were identified in this donor cohort. Future research into these common HLA types and haplotypes in a South African population will inform the feasibility of reintroducing HLA matching into the pretransplant workup.

Comparison of morbidity and mortality of very low birth weight infants in a Central Hospital in Johannesburg between 2006/2007 and 2013.

BACKGROUND: Health protocols need to be guided by current data on survival and benefits of interventions within the local context. Periodic clinical audits are required to inform and update health care protocols. This study aimed to review morbidity and mortality in very low birth weight (VLBW) infants in 2013 compared with similar data from 2006/2007. METHODS: We performed a retrospective review of patients' records from a neonatal computer database for 562 VLBW infants. These neonates weighed between 500 and 1500 g at birth, and were admitted within 48 hours after birth between 01 January 2013 and 31 December 2013. Patients' characteristics, complications of prematurity, and therapeutic interventions were compared with 2006/2007 data. Univariate analysis and multiple logistic regression were performed to establish significant associations of various factors with survival to discharge for 2013. RESULTS: Survival in 2013 was similar to that in 2006/2007 (73.4% vs 70.2%, p = 0.27). However, survival in neonates who weighed 750-900 g significantly improved from 20.4% in 2006/2007 to 52.4% in 2013 (p = 0.001). The use of nasal continuous positive airway pressure (NCPAP) increased from 20.3% to 62.9% and surfactant use increased from 19.2% to 65.5% between the two time periods (both p < 0.001). Antenatal care attendance improved from 54.4% to 70.6% (p = 0.001) and late onset sepsis (>72 hours after birth) increased from 12.5% to 19% (p = 0.006) between the two time periods. Other variables remained unchanged between 2006/2007 and 2013. The main determinants of survival to discharge in 2013 were birth weight (odds ratio 1.005, 95% confidence interval 1.003-1.0007, resuscitation at birth (2.673, 1.375-5.197), NCPAP (0.247, 0.109-0.560), necrotising enterocolitis (4.555, 1.659-12.51), and mode of delivery, including normal vaginal delivery (0.456, 0.231-0.903) and vaginal breech (0.069, 0.013-0.364). CONCLUSIONS: There was a marked improvement in the survival of neonates weighing between 750 and 900 g at birth, most likely due to provision of surfactant and NCPAP. Provision of NCPAP, prevention of necrotising enterocolitis, and control of infection need to be prioritised in VLBW infants to improve their outcome.