eRegistries: governance for electronic maternal and child health registries.
BACKGROUND
The 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.


METHODS
This 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.


RESULTS
According 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.


CONCLUSIONS
Addressing 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.
Department of International Public Health, Norwegian Institute of Public Health, P.O. Box 4404, Nydalen, N-0403, Oslo, Norway. sonja.myhre@fhi.no.
Sonja L
http://orcid.org/0000-0002-6290-9311
SL
Myhre
Centre for Health, Law and Emerging Technologies, Nuffield Department of Population Health, University of Oxford, Rosemary Rue Building, Old Road Campus, Headington, Oxford, OX3 7LF, UK.
Jane
J
Kaye
Department of Private Law, Faculty of Law, University of Oslo, Postboks 6706, St Olavs plass, 0130, Oslo, Norway.
Lee A
LA
Bygrave
Department of Informatics, University of Oslo, Gaustadalléen 23 B, N-0373, Oslo, Norway.
Margunn
M
Aanestad
Palestinian National Institute of Public Health, Qaddoura Street, Ministry of Health Building, 1st Floor, Postbox 54812, Ramallah, Palestine.
Buthaina
B
Ghanem
School of Advanced International Studies, Johns Hopkins University, 1717 Massachusetts Ave, NW, Washington, DC, 20036, USA.|HealthEnabled, Unit D11, Westlake Square, Westlake Drive, Westlake, Cape Town, South Africa, 7945.
Patricia
P
Mechael
Department of International Public Health, Norwegian Institute of Public Health, P.O. Box 4404, Nydalen, N-0403, Oslo, Norway.|Centre for Intervention Science in Maternal and Child Health, University of Bergen, Postbox 78000, 5020, Bergen, Norway.
J Frederik
JF
Frøen
Data privacy; Ethics; Governance; Law; Maternal and child health; Registry; Security
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