The Australian government has met with difficulties in persuading Australians to register with its national electronic health record system, My Health Record. Just one in five Australians have a My Health Record. I have just submitted an article for peer review that reports on the findings from the Australian Women and Digital Health Project in which the participants talked about their attitudes to and experiences with My Health Record in interviews and focus groups. As the Australian Digital Health Agency moves towards an opt-out process to register as many Australians as possible, the findings from this study offer important insights into what Australian women think of My Health Record.
The full preprint version of the article can be accessed here: Article – My Health Record preprint.
Here are the major findings:
- Despite their generally highly engaged use of online health and medical sources, awareness and use of My Health Record was quite low among the participants. When asked if they had signed up to My Health Record, only a third (24 out of the 66 participants) answered that they definitely had enrolled themselves. Nine women said they weren’t sure or couldn’t remember if they had registered, while the remaining 33 women responded either that they had not heard of My Health Record or they had decided not to sign up.
- The women who had registered for My Health Record said that they had done so because of the benefits they could see of being able to have a digital health record that could be shared across providers. None of the women who had registered for My Health Record made any reference to the opportunity to be able to view their health records themselves or add to them. As this suggests, there was little awareness among the participants that My Health Record had been initially designed as a patient engagement tool as well as a platform for storing their medical information and sharing it with their healthcare professionals.
- Technical difficulties were major barriers to enrolling and using the system successfully. The problem was not just My Health Record itself, but the MyGov platform on which it was hosted. Several women made reference to other services on MyGov being difficult to access and use.
- No participants had yet found any benefit or use for My Health Record. It was viewed more as a repository for the use of healthcare professionals than for women’s own active use as contributors and users of their data.
- Several participants said that they regularly had to remind their doctors that they had a My Health Record, only to find that the doctors were not using the system or uploading information, and even discouraging patients from using it.
- Recent publicity in relation to the Australian government’s misuse or lack of protection of citizens’ personal data have led to the participants demonstrating low levels of faith in the government’s capability to adequately manage My Health Record. Many participants also referred to their distrust in the Australian government to protect their medical information adequately. Government agencies were represented as incompetent rather than malicious, lacking the knowledge and skills to establish and maintain a national EHR system that was secure and effective enough to give them enough confidence or motivation to register and use it.
- In summary, these findings suggest that the Australian government needs to provide adequate and appropriate information to the Australian public about My Health Record, and particularly the opt-out process and negotiating consent to data sharing. It so doing, it will have to address wider problems of the Australian public’s lack of trust in the ways in which government agencies collect, share, protect or exploit their personal data.