Considering social licence to use personal health information for research: The Consumer Opinions about Research Data Sharing (CORDS) study

Michelle Krahe1, Eleanor Milligan2, Sheena Reilly3

1Menzies Health Institute Queensland, Griffith University, Gold Coast, Australia, m.krahe@griffith.edu.au

2School of Medicine, Griffith University, Gold Coast, Australia, e.milligan@griffith.edu.au

3Health Group, Griffith University, Gold Coast, Australia, s.reilly@griffith.edu.au

 

BACKGROUND

Health data which is routinely collected during the course of patient care, is a valuable resource to the advancement of research and can be an effective and efficient alternative to performing large-scale and costly clinical studies [1, 2]. Together with the growing capabilities of data analytics and our increasing capacity to link discrete datasets, the enhanced use of health data presents a remarkable opportunity for research [3-5].

In Australia, surveys indicate strong support for the use of health data in research [6], particularly when it is used for public benefit and there is trust in the organisation or individual/s conducting the research [7, 8]. For example, just under half of Australians were comfortable with government agencies using their personal data for research or policy-making [9]. Understanding consumer perspectives about the use of personal health information for research purposes is both implicit to achieving data reform in Australia, and establish a ‘social licence’ for data sharing and reuse.

To date, most of what we know about public perceptions of health research have centered on matters of privacy, consent, autonomy and use of data [10, 11], but the precursors that encourage people to share (or not share) can also be explained by the influence of social legitimacy and credibility in the presence or absence of risk or trust. We propose that examining public perceptions specifically through the lens of risk perception and trust as a measure of willingness to share data, may inform more effective strategies to engage and foster a social licence for the use of personal health information in research.

METHODS

The Consumer Opinions about Research Data Sharing (CORDS) study, was a prospective cross-sectional survey with 249 participants who were attending a large tertiary health clinic located on the Gold Coast campus of Griffith University, Australia. The survey was designed to explore consumer opinions about: (i) exposure and value of research; (ii) willingness to share personal health information; (iii) perceived risk of data-linkage research; and (iv) trust that data will be used responsibly.

Descriptive statistics were applied questions containing Likert-type scales were analysed as nominal data and expressed as counts and percentages with weighted means ± SD. Analysis of the survey data used the chi-square (c2) test of independence to determine the presence of an association. All analyses were conducted using SPSS statistics (version 25.0, IBM) and the study was approved by the Griffith University Human Research Ethics Committee (Ref.2017/818).

FINDINGS

The majority of respondents had never participated in research (61%), despite strong consensus and explicit agreement that research was ‘very important’ to Australia’s future (weighted mean of 4.86 ± 0.40), and 80% indicated they would be ‘likely’ to participate in the future.

The relationship between perceived risk of sharing personal health information and willingness to share personal health information was not significant (p=0.53), with most participants (76%) categorised as risk assured (perceived risk was low or very low) and just over two thirds were willing to share their data for research.

Participants expressed less willingness towards sharing items of information which are more sensitive, intrusive or identifiable (i.e. personal or location details). The relationship between trust in others to use data responsibly and the perception of risk involved in sharing personal health information, is illustrated in Figure 1. Overall, findings suggest three key influences of consumer willingness to share data: (i) data type; (ii) risk perception; and (iii) trust in who is accessing the data.

Figure 1. Trust (                                                     ) in different professions and entities to use personal health information responsibly, as distributed by risk (concerned, aware and assured) perceived to be related to participation in research that involves personal health information. The X-axis represents the proportion of respondents in each trust category. Markers were not shown for trust categories that were zero.

CONCLUSION

This study suggests that while consumers view sharing personal health information for research mostly positively, their willingness to share is not exclusively motivated by perceived risk. Where individuals perceive risk in environments of low trust, support for sharing data decreases.

This presentation will conclude by examining potential strategies to address factors which are important to securing a social licence for the use of data in future health and medical research. These might include strategies for building trust and credibility between the public and entities accessing and using the data; establishing confidence in the research endeavour through a shared understanding of the benefits that flow from greater access and use of health data (i.e. mitigating perceived risks); or addressing public concern related to the sensitivity and regulation of different types of data.

REFERENCES

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  2. Holman, C.D., et al., A decade of data linkage in Western Australia: strategic design, applications and benefits of the WA data linkage system. Aust Health Rev, 2008. 32(4): p. 766-77.
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  5. Research Australia Ltd., Australia Speaks Opinion Polling 2017, in Australia speaks! 2017.
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  8. Van Souwe, J., et al., Australian community attitudes to privacy survey, Office of the Australian Information Commissioner, Editor. 2017. p. 51.
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Biography:

Dr Michelle Krahe is a research professional with a passion for strategy, development and innovation in health. She is a Senior Research Fellow within the Health Executive at Griffith University and a Visiting Research Fellow with Gold Coast University Hospital. Michelle is responsible for the development and management of research initiatives for the Pro Vice Chancellor (Health) and has over 12 years’ experience in clinical research, working in academia, health services and research institutes.

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