Krahe, Michelle, Milligan, Eleanor, and Reilly, Sheena (2019) Personal health information in research: Perceived risk, trustworthiness and opinions from patients attending a tertiary healthcare facility. Journal of Biomedical Informatics, 95. 103222.

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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.

Item ID:	81167
Item Type:	Article (Research - C1)
ISSN:	1532-0480
Keywords:	Personal health information, Public opinion, Social license, Information sharing, Informatics, Clinical research
Copyright Information:	© 2019 Elsevier Inc. All rights reserved.
Funders:	Australian Research Council (ARC)
Projects and Grants:	ARC Grant#20160613
Date Deposited:	27 Nov 2023 22:42
FoR Codes:	46 INFORMATION AND COMPUTING SCIENCES > 4601 Applied computing > 460102 Applications in health @ 30% 46 INFORMATION AND COMPUTING SCIENCES > 4604 Cybersecurity and privacy > 460402 Data and information privacy @ 30% 48 LAW AND LEGAL STUDIES > 4807 Public law > 480706 Privacy and data rights @ 40%
SEO Codes:	28 EXPANDING KNOWLEDGE > 2801 Expanding knowledge > 280112 Expanding knowledge in the health sciences @ 50% 20 HEALTH > 2099 Other health > 209999 Other health not elsewhere classified @ 50%
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