In light of the Australian Digital Health Agency’s commitment to delivering the best possible digital health services to Australia, we recognise the importance of going out and talking to people, hearing their individual health issues and concerns. It’s been one of the most interesting aspects of my job in the Agency’s Communications team.
We talked to a diverse group of migrants and staffers about their particular health issues and attitudes to a digital health system. Here’s a cross section of the participants, their views and, in some cases, my thoughts on them.
Recently, the Australian Digital Health Agency’s CEO Tim Kelsey and I visited the Australian Migrant Resource Centre (AMRC), an independent, non-government agency supporting the effective settlement of migrants and refugees. The AMRC uses a community development approach, supporting new arrivals to contribute effectively to society, culture, economy and environment.
Shabboo Shariati, Iranian, Interpreter
Shabboo has been living in Australia for five years and volunteers at the AMRC. Her husband is a doctor and she specialises in interpreting at medical appointments, assisting clients who speak Kurdish and Persian. Shabboo believes the biggest obstacle for effective migrant/refugee health is language, which comes as no surprise to me.
She explains that patients have been known to unintentionally misguide their GP, because even in their own language they can have difficulty explaining their physical ailment, let alone in English. Given the immigrants are new to the country and haven’t yet settled, they tend to move around, changing GPs in the process. Sometimes their medical information gets lost.
Shabboo also talks about the need to communicate consistently; having the My Health Record available is one thing, but patients need to be reminded of its benefits and capabilities.
Cynthia Caird, Senior Manager at AMRC for 19 years
Cynthia explained that the highest numbers of AMRC’s clients are Afghan – single men or women with multiple children and families. More recent arrivals are Syrian families, as well as Armenians, Bhutanese, Burmese and Sri Lankans (who have come out from detention). Other clients include Congolese, Iranian and Iraqis, with a wide variety of health issues The AMRC has over 45 workers who speak 80 different languages. The Centre receives a health alert from the Department of Immigration for every new arrival with a considerable medical or disability issue. When required, they’ll take the client straight from the airport to the hospital for medical attention. The AMRC also introduces clients and their families to the local GP as part of their settlement. Due to this, and the AMRC’s advocacy role, many GP practices have employed doctors who speak the languages of new arrivals. Most clients will eventually own a mobile phone but not computers, so for access to their My Health Record, they need to access an application (an ‘app’) for their phone, a project that is being developed.
Melissa, Consumer Advocate
Melissa is the parent of primary school aged children who don’t have major health issues – but she's interested in having their medical information tracked. Melissa was also her father’s carer, and in the last years of his life, he had three major health issues – heart, hip, and cancer. He had seven specialists attending to him as a private patient, but was admitted to different private and public hospitals depending on where the ambulance took him. This was some years ago and a lot of information was being filtered through Melissa as his primary carer. There was one time when her father was discharged from hospital to another health service and the summary stated his 'dementia was getting worse' – only her father didn’t have dementia – it was a mix up with patient information. It was very important for Melissa that this information be corrected quickly.
Ultimately, Melissa sees digital health as a tool to help her look after the people she loves. I listen to her story, aware that a digital system does have the potential to streamline the processes she's had to contend with in the past.
Chris Christensen, Cancer Voices SA
One in three people in Australia are dealing with cancer and Chris has a rare one. She believes rare cancers ‘don’t get much of a look-in’, and talks about the divide between public and private health, as well as issues around the involvement of allied health. Chris has a ‘healthy scepticism’ towards the My Health Record system. She doesn’t trust it, believing privacy protections won’t be in place. I’m reminded of the importance of public education around privacy and security concerns, fully aware that these aspects are a priority for the Australian Digital Health Agency and that highly effective systems are in place to protect patient information. Chris also admits she doesn’t like the opt-out option. She’s unclear about the completeness of the record too, although she appreciates the idea of birth-to-death continuity in a record, especially for people who don’t have a consistent GP.
Ellen Kerrins, Health Consumer Alliance
Ellen says there is a re-occurring issue with consumers on principles of quality and safety. There needs to be systems in place which prevent medication mismanagement. Ellen talks about her 90 year-old grandmother who is in Aged Care who has mastered Facetime with her grandchildren and internet banking, but is looking forward to the wider adoption of digital health. Her grandmother is constantly having to reiterate her health issues with specialists, which is a source of anxiety for her.
Jenny Hughes, CEO of the Catalyst Foundation, Ageing and Disability services
Jenny states that South Australia is one of the slowest jurisdictions for the uptake on My Health Record. She believes that GPs need more training, and a need for more education and information.
In the northern region of South Australia, a lot of people don’t have a regular GP, particularly the 75 years and above age group. These patients go to a clinic and see whichever doctor is on the roster. The continuity of care is not there, and this can be quite problematic. Jenny sees that benefit of having a My Health Record is that it can help with continuity of care.
Jenny goes on to make the point that there has been success with local community ‘Peer Champions’ being a point of reference for people regarding education, language, and general information, as well as more specific things like getting a MyGov account, My Aged Care information and the National Disability Insurance Scheme. Jenny suggests dispensing health information could also part of the Peer Champion’s agenda.
We listen to all of these points of view and others with interest. I’m aware that this meeting is not about coming up with solutions to the varied and complicated issues; it’s about connecting with people and hearing their stories. This is why the Australian Digital Health Agency will soon be launching a wide reaching and comprehensive call-to-action for communities around Australia to engage with us in developing the new National Digital Health Strategy. In doing so, our work we be shaped around the people and communities we serve.
Robyn Lowe is the Communications Program Manager at the Australian Digital Health Agency
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