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Personal health information in research: Perceived risk, trustworthiness and opinions from patients attending a tertiary healthcare facility.

Abstract：

BACKGROUND:Personal health information is a valuable resource to the advancement of research. In order to achieve a comprehensive reform of data infrastructure in Australia, both public engagement and building social trust is vital. In light of this, we conducted a study to explore the opinions, perceived risks and trustworthiness regarding the use of personal health information for research, in a sample of the public attending a tertiary healthcare facility. METHODS:The Consumer Opinions of Research Data Sharing (CORDS) study was a questionnaire-based design with 249 participants who were attending a public tertiary healthcare facility located on the Gold Coast, Australia. The questionnaire was designed to explore opinions and evaluate trust and perceived risk in research that uses personal health information. Concept analysis was used to identify key dimensions of perceived risk. RESULTS:Overall participants were supportive of research, highly likely to participate and mostly willing to share their personal health information. However, where the perceived risk of data misuse was high and trust in others was low, participants expressed hesitation to share particular types of information. Performance, physical and privacy risks were identified as key dimensions of perceived risk. CONCLUSION:This study highlights that while participant views on the use of personal health information in research is mostly positive, where there is perceived risk in an environment of low trust, support for research decreases. The three key findings of this research are that willingness to share data is contingent upon: (i) data type; (ii) risk perception; and (iii) trust in who is accessing the data. Understanding which factors play a key role in a person's decision to share their personal health information for research is vital to securing a social license.

journal_name

J Biomed Inform

journal_title

Journal of biomedical informatics

authors

Krahe M,Milligan E,Reilly S

doi

10.1016/j.jbi.2019.103222

subject

Has Abstract

pub_date

2019-07-01 00:00:00

pages

103222

eissn

1532-0464

issn

1532-0480

pii

S1532-0464(19)30140-6

journal_volume

95

pub_type

杂志文章

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