My Health Record: Remain in or opt out?

After 31 January 2019, every Australian, including all people living with HIV (PLHIV), will have a My Health Record (MHR) account established by the Australian Digital Health Agency (ADHA), if they have not opted out.

MHR is an online summary of your key health information, operated by the Australia Digital Health Agency, which once activated can include information from GPs, specialists, pharmacists, pathology labs or diagnostic imaging providers. The main benefit of MHR is all your health information will be in one place. For example, prescriptions, medical conditions, allergies, test results, medicines you’ve had dispensed by your pharmacist and your visits to your doctor, referral letters between your doctors, and GP visit and hospital summaries.

We’ve heard from a range of people including PLHIV that they’re excited by and will benefit from MHR. These are PLHIV who are ageing, those living with comorbidities and complex care needs, and likely to have numerous hospital admissions. PLHIV are eager to own their health information and MHR will empower them in shared decision process making with their doctors, when seeing multiple healthcare providers. MHR will reduce the duplication of tests and waiting times for test results, as well as the risk of adverse events, and could save your life in an emergency.

Concerns remain about some primary and secondary uses of MHR.  People who choose to remain in the MHR are providing informed consent for the linking of their health data, which is the ‘secondary use’ of MHR data. PLHIV have also shared concerns about data control and ownership of health data. You can choose to have a MHR but make a decision not to share your health information for research and clinical trials.  While the Framework to guide the secondary use of My Health Record system data has been published, the first release of secondary use data will not occur until at least 2020 under the custodianship of the Australian Institute of Health and Welfare (AIHW).

My main concern is the potential risk of unintended privacy disclosures, stigma and discrimination, and/or potential criminalisation for some people (including PLHIV). The implications or risk of these privacy impacts can pose significant problems for people such as sex workers; people who use drugs (licit and illicit); and people who are sexually active and not practicing reasonable precautions. The intersectionality between sex and drug use increases and compounds the risk. Wrapped up in this, is disclosure, discrimination and potential for prosecution for behaviour, which could be viewed as illegal activity.

A scenario of the intersection between sex and drug use, and MHR, could be about an educated Gay Man (unknown HIV status), let’s call him ‘Gary’.  Gary works in the corporate sector earning over $100,000 per year and lives in the inner city. He’s well connected socially, parties on weekends with alcohol, drugs, and numerous sexual partners; regular, fuck buddies and casual sexual encounters. Over a 12-month period, Gary is diagnosed and treated for three sexual transmitted infections (STIs). He rarely uses condoms, doesn’t know about PEP and doesn’t want to go onto PrEP because he feels it’s not for him. With Gary’s PBS and MBS items in his MHR and treatment summaries uploaded from different clinical services Gary has been accessing, section 79 of the NSW Public Health Act could create a risk for Gary. If a sexual partner contacts the police and there’s an investigation, they could apply for an order from a judicial officer to access Gary’s health information and this could be used against him, although this has never been done in practice.

All of this said, it is important to note that after January 31, you can still opt out of MHR at any time in your life and permanently delete your record if you choose to. If you decide to remain in MHR, you’ll be able to closely manage your access and privacy settings, delete individual documents and set access codes to control who sees your information and still gain the benefits of the system.

Should Gary remain in MHR or would it be best for him to opt out?

Given that confidentiality impacts all of us living with or without HIV differently, we all need to be fully aware who has access to our health data, when they can access it, what it’s being used for and the potential implications.

Craig Cooper is CEO of Positive Life NSW.

If you need further information or support about what this means for you please contact Positive Life on (02) 9206-2177 or visit http://bit.ly/MHR-PLHIV