ERegistries: governance for electronic maternal and child health registries.

Sonja L Myhre,Margunn Aanestad,Patricia Mechael,J Frederik Frøen,Jane Kaye,Buthaina Ghanem,Lee A Bygrave

doi:10.1186/s12884-016-1063-0

Abstract

BackgroundThe limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Global health agencies, leaders, and funders are prioritizing strategies that focus on acquiring high quality health data. Electronic maternal and child health registries (eRegistries) offer a systematic data collection and management approach that can serve as an entry point for preventive, curative and promotive health services. Due to the highly sensitive nature of reproductive health information, careful consideration must be accorded to privacy, access, and data security. In the third paper of the eRegistries Series, we report on the current landscape of ethical and legal governance for maternal and child health registries in developing countries.MethodsThis research utilizes findings from two web-based surveys, completed in 2015 that targeted public health officials and health care providers in 76 countries with high global maternal and child mortality burden. A sample of 298 public health officials from 64 countries and 490 health care providers from 59 countries completed the online survey. Based on formative research in the development of the eRegistries Governance Guidance Toolkit, the surveys were designed to investigate topics related to maternal and child health registries including ethical and legal issues.ResultsAccording to survey respondents, the prevailing legal landscape is characterized by inadequate data security safeguards and weak support for core privacy principles. Respondents from the majority of countries indicated that health information from medical records is typically protected by legislation although legislation dealing specifically or comprehensively with data privacy may not be in place. Health care provider trust in the privacy of health data at their own facilities is associated with the presence of security safeguards.ConclusionAddressing legal requirements and ensuring that privacy and data security of women’s and children’s health information is protected is an ethical responsibility that must not be ignored or postponed, particularly where the need is greatest. Not only are the potential harm and unintended consequences of inaction serious for individuals, but they could impact public trust in health registries leading to decreased participation and compromised data integrity.

Highlights

The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children
As the Millennium Development Goal (MDG) era draws to a close and the Sustainable Development Goals (SDG) are ushered in, a shift towards long-term investments, sustainable strategies, and infrastructure development have emerged as new priorities [2, 3]
Based on formative research conducted in the development of the eRegistries Governance Guidance Toolkit (Frame 1), the aim of the surveys was to assess the current status of legal, privacy and security issues relevant to maternal and child health registries in low and middle income countries (LMIC)

Summary

Introduction

The limited availability of maternal and child health data has limited progress in reducing mortality and morbidity among pregnant women and children. Growing support for strengthening civil registration and vital statistics [4,5,6] and the call for more and better maternal health data in 2010 by leadership in eight global health agencies [7] all point to the need to improve data collection strategies in low and middle income countries (LMIC). Against this backdrop, in June 2015 the World Health Organization (WHO), the United States Agency for International Development (USAID), and the World Bank released The Roadmap for Measurement and Accountability and Post-2015 5Point Call to Action that highlight strategies for improving data collection, analysis, access, and use [8]. The burgeoning focus on measurement, monitoring and infrastructure and universal health coverage and equity are consistent with registry methodology that involves ongoing, population-based data collection that strengthens data availability, quality and use [16, 20]

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