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. Author summary My Health Record is Australia’s national personal health record system. Concerns about data privacy, security, and misuse have affected engagement with the system. Members of communities affected by bloodborne viruses and sexually transmissible infections may have increased concerns about sharing personal health information due to stigma and discrimination. In 2020, we surveyed the Australian public and members of communities affected by HIV and sexually transmissible infections about their engagement with digital health systems like My Health Record. We found low levels of knowledge of My Health Record and over a quarter of the sample had opted out of the system. Those in more challenging circumstances (e.g. people who were unemployed, receiving government benefits, or who had poor self-reported health), knew less about My Health Record. Participants who had opted out of My Health Record were more likely to have a university degree, one or more health conditions, or to be a member of a community affected by HIV or sexually transmissible infections. These results are concerning, given that My Health Record is supposed to improve health care, particularly for people with chronic health conditions and members of marginalised communities. We recommend investment in community education to address concerns with the My Health Record system. Opting out or deleting one’s record is understandable for people who perceive more risks than benefits from the system.