Consent to data linkage in a large online epidemiological survey of 18-23 year old Australian women in 2012-13.
Classification and regression trees
Cohort studies
Consent
Data collection
Data linkage
Health surveys
Online
Opt-in consent
Young women
Journal
BMC medical research methodology
ISSN: 1471-2288
Titre abrégé: BMC Med Res Methodol
Pays: England
ID NLM: 100968545
Informations de publication
Date de publication:
11 12 2019
11 12 2019
Historique:
received:
27
05
2018
accepted:
27
11
2019
entrez:
13
12
2019
pubmed:
13
12
2019
medline:
6
10
2020
Statut:
epublish
Résumé
Consent 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). The 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. In 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%. In 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.
Sections du résumé
BACKGROUND
Consent 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).
METHODS
The 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.
RESULTS
In 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%.
CONCLUSIONS
In 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.
Identifiants
pubmed: 31829134
doi: 10.1186/s12874-019-0880-z
pii: 10.1186/s12874-019-0880-z
pmc: PMC6907173
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
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