Evidence map›Paper›PMID 27663979›Full record

ArticleBMC pregnancy and childbirth2016

eRegistries: governance for electronic maternal and child health registries.

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

Abstract read
In one paragraph

Article in BMC pregnancy and childbirth, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. BMJ global health · 2024
    Article
  2. Article
  3. Article
  4. Article
  5. Multiple Pregnancy: Epidemiology and Association with Maternal and Perinatal Morbidity.Revista brasileira de ginecologia e obstetricia : revista da Federacao Brasileira das Sociedades de Ginecologia e Obstetricia · 2018
    Review
  6. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Sonja L MyhreDepartment of International Public Health, Norwegian Institute of Public Health, P.O. Box 4404, Nydalen, N-0403, Oslo, Norway. sonja.myhre@fhi.no.ORCID http://orcid.org/0000-0002-6290-9311
Jane KayeCentre 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.
Lee A BygraveDepartment of Private Law, Faculty of Law, University of Oslo, Postboks 6706, St Olavs plass, 0130, Oslo, Norway.
Margunn AanestadDepartment of Informatics, University of Oslo, Gaustadalléen 23 B, N-0373, Oslo, Norway.
Buthaina GhanemPalestinian National Institute of Public Health, Qaddoura Street, Ministry of Health Building, 1st Floor, Postbox 54812, Ramallah, Palestine.
Patricia MechaelSchool of Advanced International Studies, Johns Hopkins University, 1717 Massachusetts Ave, NW, Washington, DC, 20036, USA.
J Frederik FrøenDepartment of International Public Health, Norwegian Institute of Public Health, P.O. Box 4404, Nydalen, N-0403, Oslo, Norway.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

Data privacyEthicsGovernanceLawMaternal and child healthRegistrySecurity

Identifiers

PMID27663979
PMCPMC5035445

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.