Evidence map›Paper›PMID 31829134›Full record

ArticleBMC medical research methodology2019

Consent to data linkage in a large online epidemiological survey of 18-23 year old Australian women in 2012-13.

Anna Graves, Deirdre McLaughlin, Janni Leung, Jennifer Powers

Abstract read
In one paragraph

Article in BMC medical research methodology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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

What it found

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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

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3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

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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

4 authors.

Anna GravesResearch Centre for Generational Health and Ageing, University of Newcastle, Newcastle, New South Wales, Australia. anna.graves@newcastle.edu.au.ORCID 0000-0003-3892-2898
Deirdre McLaughlinBloomberg Data For Health Initiative, Global Burden of Disease Group, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia.
Janni LeungSchool of Psychology, The University of Queensland, Brisbane, Australia.
Jennifer PowersResearch Centre for Generational Health and Ageing, University of Newcastle, Newcastle, New South Wales, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundConsent to link survey data with health-related administrative datasets is increasingly being sought but little is known about the influence of recruiting via online technologies on participants' consents. The goal of this paper is to examine what factors (sociodemographic, recruitment, incentives, data linkage information, health) are associated with opt-in consent to link online survey data to administrative datasets (referred to as consent to data linkage).

methodsThe Australian Longitudinal Study on Women's Health is a prospective study of factors affecting the health and well-being of women. We report on factors associated with opt-in consent to data linkage at the end of an online survey of a new cohort of 18-23 year old Australian women recruited in 2012-13. Classification and Regression Tree analysis with decision trees was used to predict consent.

resultsIn this study 69% consented to data linkage. The provision of residential address by the individual, or not (as a measure of attitudes towards privacy), was the most important factor in classifying the data into similar groups of consenters (76% consenters versus 47% respectively). Thereafter, for those who did not provide their residential address, the incentives and data linkage information that was offered was the next most important factor, with incentive 2: limited-edition designer leggings and additional information about confidentiality showing increases in consent rates over Incentive 1: AUD50 gift voucher: 60% versus 37%.

conclusionsIn young Australian women, attitudes towards privacy was strongly associated with consenting to data linkage. Providing additional details about data confidentiality was successful in increasing consent and so was cohort appropriate incentives. Ensuring that prospective participants understand the consent and privacy protocols in place to protect their confidential information builds confidence in consenting to data linkage.

Indexed as

ConfidentialityInformation Storage and RetrievalInformed ConsentInternetMedical Record LinkageWomen's HealthAdolescentAttitudeAustraliaFemaleHumansLongitudinal StudiesSurveys and QuestionnairesYoung AdultClassification and regression treesCohort studiesConsentData collectionData linkageHealth surveysOnlineOpt-in consentYoung women

Identifiers

PMID31829134
PMCPMC6907173

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LicenceCC BY
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Registered trials

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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.