Data management for early hearing detection and intervention in South Africa

Introduction: Internationally, newborn hearing screening is becoming part of standard neonatal healthcare service guidelines for the implementation of early hearing detection and intervention (EHDI) initiatives, including screening, diagnosis, data management and intervention. Data management includes the processes of data collection and storage thereof, as well as analysis and interpretation of data to guide the future planning, implementation and evaluation of EHDI programmes. There have been limited studies on data management in the South African EHDI context.Methods: The aim of this study was to determine the type of data management systems in use in South Africa and whether they allow for cross-disciplinary sharing and evaluation of the EHDI processes. A survey instrument on the management of EHDI data was developed and sent to HI HOPES referral agents in both public and private sectors.Results: A return rate of 80% was achieved, with 19 (59%) public sector and 13 (41%) private sector audiologists participating in the study. The data revealed that there was no uniform data management system in use nationally, and no consistent shared system within the public or private sectors. The majority of respondents (44%) used a paper-based system for data recording. No institutions were using data management systems that enabled sharing of information with other medical professionals.Conclusion: Data management and tracking of the pathway from screening to diagnosis to intervention is necessary to ensure quality care and outcomes for children identified with hearing loss. International studies reveal the importance of effective implementation of data management systems; however, to date these have focussed on developed country contexts. Data management challenges identified in this study reflect international challenges as well as challenges unique to a developing country context.