Carefully consider all the personal risks and benefits of a health record

Consider the nature of the risk

The main risk to consider is the possibility of unauthorised disclosure of your HIV status within a health care organisation or outside of it. A relevant metaphor is ‘the bell cannot be un-rung’ once everyone has heard it. There are legal consequences for a provider who discloses your health information outside the organisation, such as suspension of their registration. But it is not a crime, and there is no simple way to get compensation for all the harm this breach of privacy might cause to your life.

The severity of the risk depends on certain aspects of your life circumstances. If you are public about your HIV status, unauthorised disclosure might cause less harm — but gossip and whisper campaigns can still cause considerable suffering.

If you live in a small rural, regional or remote community, unauthorised disclosure of a stigmatised condition might cut off people who are important sources of care, support and practical assistance.

Potential benefits of having a MyHR

As a person with HIV you are living with a chronic (ongoing) and sometimes quite complex (multi-layered) condition. The benefits of a My Health Record are strongest for people who receive health care from multiple providers. The documents stored in a MyHR provide a snapshot of your health at different points in time, and they can make it easier for care providers to understand your health status and share important information with each other.