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6 December 2018

When HIV was first discovered, the prognosis and life expectancy for those affected was poor — but in 2018, thanks to new treatments, living with HIV is a vastly different experience.

With the right treatment, those diagnosed can now expect to live as long as someone without HIV.

But as Positive Life NSW chief executive officer Craig Cooper explains, for people living with HIV (PLHIV) who have multiple conditions to manage, accessing consistent and coordinated healthcare can be difficult.

“A lot of people who have four or more diagnoses are operating in a position where they’re sometimes having difficulties remembering or juggling the expectations of multiple practitioners,” he says.

Mr Cooper was a key speaker at the Australian Digital Health Agency’s (ADHA) latest Community and Consumer Listening Forum in Sydney this week.

The forums provide a space for community organisations and consumer health groups to provide feedback, ask questions and raise concerns about My Health Record.

Mr Cooper says he initially held reservations about security and privacy — and the potential for people living with an infectious disease to be further stigmatised, in the event of privacy misuse.

“Those thoughts have changed,” he says, explaining the recent passing of the My Health Records Amendment (Strengthening Privacy) Bill 2018 has been the catalyst for his shift in thinking.

The fact Australians can now opt in or opt out of having a My Health Record at any time during their life is reassuring for people living with HIV, Mr Cooper says.

Increased penalties for misuse of information, the added layer of protection requiring law enforcement and government agencies to have court order before they can access health information and other privacy-strengthening provisions are also welcome changes, he says.

“Concerns by us and other health consumer groups were seriously taken into consideration,” Mr Cooper says.

PLHIV that have been in the My Health Record system for some time as part of trial sites in NSW have told Positive Life NSW that having a digital health record has improved their engagement with and quality of their healthcare.

“There’s been multiple diagnoses for some of these people, and their experience of My Health Record and juggling the requirements of different practitioners has been quite positive,” Mr Cooper says.

“They’ve been really pleased that they’ve been able to get treatment summaries, referral information or pathology results in one place.”

For example, having test results available online in one place means people using My Health Record are less likely to be subjected to double-ups in blood tests ordered by multiple doctors which can cause unnecessary trauma for PLHIV.

“It’s actually been extremely encouraging to know the system’s working and it’s working well,” Mr Cooper says.

To further strengthen digital health for PLHIV and the broader community, Mr Cooper says he would like to see more healthcare practitioners and specialists engaged with the My Health Record implementation and adaptation.

“I think we need to more actively engage with health service providers, and in particular clinicians,” he says.

“A lot of our consumers, PLHIV, are saying they want doctors to upload their data to My Health Record — but they’re time poor.”

ADHA’s Chief Medical Adviser, Professor Meredith Makeham, says the Australian community’s calls for even stronger privacy and security protections within My Health Record have been heard.

“We want to empower people with chronic conditions like HIV to better manage their own care,” she says.

“We are listening to the community and we’re committed to continuing the conversation, to help ensure all Australians can access the benefits of digital health if they choose to.”