Evidence map›Paper›PMID 31139457›Full record

ReviewBMJ global health2019

How to use relevant data for maximal benefit with minimal risk: digital health data governance to protect vulnerable populations in low-income and middle-income countries.

Nicki Tiffin, Asha George, Amnesty Elizabeth LeFevre

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in BMJ global health, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 47 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
47citing papers in PubMed, 3 pooled it
–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

47 citing papers in PubMed, 3 syntheses or guidelines pooled it.

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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

3 authors.

Nicki TiffinWellcome Centre for Infectious Disease Research in Africa, University of Cape Town, Cape Town, South Africa.
Asha GeorgeSchool of Public Health, University of the Western Cape Faculty of Community and Health Sciences, Cape Town, South Africa.ORCID 0000-0002-5968-1424
Amnesty Elizabeth LeFevreDivision of Epidemiology and Biostatistics, Public Health and Family Medicine, University of Cape Town, Rondebosch, South Africa.ORCID 0000-0001-8437-7240

Funding

H3ABioNet: informatics solutions for H3AfricaU24HG006941 · NHGRI · UNIVERSITY OF CAPE TOWN · PI MULDER, NICOLA · 2017 to 2021
$12.9M
B positive_A population based evaluation of expanded ART access in pregnancyR01HD080465 · NICHD · UNIVERSITY OF CAPE TOWN · PI KALK, EMMA KATE · 2014 to 2019
$4.3M
NHGRI NIH HHS U24 HG006941NICHD NIH HHS R01 HD080465Wellcome Trust
6 · The paper itself

Abstract

Globally, the volume of private and personal digital data has massively increased, accompanied by rapid expansion in the generation and use of digital health data. These technological advances promise increased opportunity for data-driven and evidence-based health programme design, management and assessment; but also increased risk to individuals of data misuse or data breach of their sensitive personal data, especially given how easily digital data can be accessed, copied and transferred on electronic platforms if the appropriate controls are not implemented. This is particularly pertinent in low-income and middle-income countries (LMICs), where vulnerable populations are more likely to be at a disadvantage in negotiating digital privacy and confidentiality given the intersectional nature of the digital divide. The potential benefits of strengthening health systems and improving health outcomes through the digital health environment thus come with a concomitant need to implement strong data governance structures and ensure the ethical use and reuse of individuals' data collected through digital health programmes. We present a framework for data governance to reduce the risks of health data breach or misuse in digital health programmes in LMICS. We define and describe four key domains for data governance and appropriate data stewardship, covering ethical oversight and informed consent processes, data protection through data access controls, sustainability of ethical data use and application of relevant legislation. We discuss key components of each domain with a focus on their relevance to vulnerable populations in LMICs and examples of data governance issues arising within the LMIC context.

Indexed as

consentdigital healthethicsgovernanceLMICslow and middle income countriesmHealth

Identifiers

PMID31139457
PMCPMC6509603

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.