Knowledge of Australia’s My Health Record and factors associated with opting out: Results from a national survey of the Australian general population and communities affected by HIV and sexually transmissible infections

Abstract

My Health Record is Australia’s national, digital, personal health record system. All Australians have a record in the system unless they choose to opt out of it. Concerns about privacy, security and unwanted sharing of data, particularly in marginalised populations, may impede its use. We conducted a national, online survey of Australians’ attitudes to digital health in April-June 2020. The sample (N = 2,240) was recruited from the general population and four priority populations affected by HIV and other sexually transmissible infections: gay and bisexual men, people living with HIV, sex workers, and trans and gender diverse people. This analysis assesses factors associated with greater knowledge of My Health Record and the likelihood of opting out of the system. Due to increased concerns about data privacy and misuse, we hypothesised that priority population members would know more about and be more likely to opt out of the system. We found that most of the sample (71.2%) knew little about My Health Record and 29.4% had opted out of the system. Greater knowledge of My Health Record was associated with younger age, having a university degree, having one or more health conditions, and being trans or gender diverse. Being a student, unemployed, receiving government benefits, or having poor self-reported health, were associated with less knowledge. Opting out of My Health Record was associated with having a university degree, one or more health conditions, and being a priority population member. The likelihood of opting out was lower among people born overseas, residents of Queensland, and people who were students, unemployed, or receiving government benefits. We recommend additional investment in community-based education to address people’s concerns about My Health Record and support people to use the system without compromising their health care, privacy, or security. Opting out may be a legitimate choice for people who perceive more risks than benefits from the system.

Communication and coordination of care for people living with HIV: a qualitative study of the patient perspective

“…While amendments have been made to protect vulnerable populations from privacy breaches within MHR, there are still significant concerns for many consumers, and little is known about how this has directly affected PLHIV [ 40 ]. However, recent literature has demonstrated that knowledge about MHR remains low in vulnerable populations such as PLHIV [ 41 , 42 ]. In this study, those who expressed hesitancy also acknowledged utility in these systems.…”

Medical profile of patients referred to an Australian postgraduate oral surgery clinic

“…To date, uptake of the Australian effort (My Health Record) has been haphazard for a variety of reasons. These include public concerns over privacy, data security, and simply a lack of awareness of its existence (Holt et al, 2023 ).…”