Eliciting meta consent for future secondary research use of health data using a smartphone application - a proof of concept study in the Danish population

BMC Medical Ethics

Research Article

Thomas Ploug¹  Søren Holm² 

[1] Centre for Applied Ethics and Philosophy of Science, Department of Communication, Aalborg University Copenhagen, A C Meyers Vænge, 2450 Kbh. SV, Aalborg, Denmark;Centre for Social Ethicse and Policy, School of Law, University of Manchester, M13 9PL, Manchester, UK;Center for Medical Ethics, Faculty of Medicine, University of Oslo, Oslo, Norway;Centre for Applied Ethics, Aalborg University, Aalborg, Denmark;

关键词: Blanket consent;    Broad consent;    Meta consent;    Proof of concept;    Specific consent;    Secondary research use of health data;    Smartphone application;   

DOI  :  10.1186/s12910-017-0209-6

 received in 2016-10-10, accepted in 2017-08-01,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundThe increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific consent, broad consent, blanket consent or not at all.This study investigates whether meta consent preferences can be successfully elicited by a smartphone application in the adult Danish population.MethodsA smartphone app was developed for the elicitation of meta consent preferences. An invitation to use the app was distributed to a stratified, representative sample of the Danish adult population. The meta consent choices, the use of the app, user experience data, and demographic data were logged and analysed statistically using IBM SPSS version 20.ResultsOf 1000 potential respondents 221 used the app. One hundred eighty-eight of the respondents were female and 103 male. The age range was 19 to 79 years with an average of 51 years (SD 16). Most users indicate 1) that they find the choices they are asked to make easy to understand (>75% find it ‘Easy’ or ‘Very easy’), 2) that the application is easy to use (>75% find it ‘Easy’ or ‘Very easy’), and 3) that this kind of choice should be offered to people (89% find it ‘Absolutely’ or ‘Somewhat’ important).ConclusionsIt is possible to collect meta consent preferences in the general, adult population using a smartphone app.

【 授权许可】

CC BY   
© The Author(s). 2017

【 图 表 】

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