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Still from My Health Record information video.

Dementia peak talks opting in or out of My Health Record

My Health Record has the potential to reduce some of the confusion and distress that Australians with dementia can face in clinical and hospital settings, the peak body for the disease has said.

Dementia Australia welcomed the potential offered by My Health Record but also acknowledged the importance of the three-month opt-out period.

Kaele Stokes, the executive director of consumer engagement, policy and research, said the system would mean people living with dementia won’t have to repeat their health history each time they see a healthcare provider.

“And when supporting a person living with dementia or acting with power of attorney, families and carers, as well as health professionals, will be able to access vital information such as their medication lists, shared health summaries, organ donor decisions, allergy information and advanced care plans with ease and simplicity,” Stoke said.

Still, the peak acknowledge that some people may not want a single electronic health record and added that people with a cognitive impairment, particularly, need support to make the decision to opt out of the system over the coming months.

Earlier this week, health and consumer rights bodies offered competing advice on whether to opt out of the system.

Digital Rights Watch, an advocacy group that aims to defends digital rights in Australia, urged people to be aware of what it deemed “deeply concerning” privacy issues.

Chair Tim Singleton Norton said: “Health information is incredibly attractive to scammers and criminal groups. Creating such a massive database of Australian’s personal, private health information is highly likely to become a target in the future.”

Meanwhile, Aged & Community Services Australia chief executive Pat Sparrow said My Health Record would benefit older Australians as well as aged care facilities and staff, carers, families and health care professionals.

“Older Australians need to be supported in healthy ageing and this streamlined approach to information-sharing promises to improve the flow of information from hospital to home to residential aged care and ultimately contribute to the quality of care for an individual,” Sparrow said.

Theresa Flavin, a 52 year old mother of five who was diagnosed with younger onset dementia at the age of 46, welcomed the My Health Record but recognised the importance of the opt-out model.

“There have been a number of instances where things have gone wrong, because I get asked all kinds of questions by health professionals that I cannot answer because I can’t remember or I might get confused, and this has been very distressing,” Flavin said.

“I am happy to trade off some privacy to reduce the risks of mistakes. It is not okay to expect my family, particularly my kids, to remember all of my health history or my medications – so I can’t argue against the My Health Record.”

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