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. 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.
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.
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.
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.