Nine years ago, Fiona’s husband Peter was diagnosed with a brain tumour. It was benign and they were told that it wouldn’t kill him, but would be ‘a bit of a nuisance’. Peter, who worked as a business consultant in Western Australia, went into hospital for surgery – and then their world was shattered. There was a complication after his second operation and Peter, vulnerable to infection, contracted meningitis. He suffered brain damage and has required around-the-clock care ever since. What initially seemed like something Peter and Fiona could live with, now consumes their whole lives.
Fiona is one of a group of carers and patients who have kindly given up their morning to share insights with me on how health services can be improved with better access to patient information. We are in the community training room of the Health Consumers’ Council in Perth, on the campus of the Royal Perth Hospital. Outside it is bright and blustery; inside everyone is silent and focussed as Fiona describes, with extraordinary dignity, the journey she, Peter (now 49) and their two-year-old daughter have travelled since.
Peter routinely requires hospital treatment. Fiona collects the paper forms from his care facility, which are passed on to the ambulance paramedics, and then to the triage nurses in the Emergency Department (ED), and then they wait – often for hours – for him to be admitted to a ward. Although his information travels with him, Fiona says that it is not always obvious to the treating team what the priority health concerns are. Peter’s medical needs are complex and there are quite a few critical health issues that Fiona has asked to be kept on his file at the hospital as she isn’t always available to attend ED. ‘We are not medical people’, she says. ‘We don’t know how to find our way around the health system. I can show you the letters to the hospital I’ve written asking them to improve their process. I’ve seen my husband go through so much. Even when we pre-agree an admission with his specialist, I still have to go through the ED. I just find it remarkable – ridiculous.’
Fiona wants her husband’s history to be available electronically to his entire treating team, and she would like this to happen without having to repeat herself or intervene. On one occasion, because his record is not shared digitally, his specialist wasn’t made aware of a drug that a hospital doctor had prescribed – and that could have been dangerous for him. ‘It just fell through the cracks’, she says.
One of the others in the room says that the requirement to repeat their history every time they visit hospital ‘re-traumatises me’. People nod their heads. ‘I am sick and tired of telling the same story over and over again’, says Robert, who has joined by video conference from Bunbury. Robert, like many of the others in the room, has signed up for a My Health Record, which he says can solve this problem but adds that it needs to be more useful. There isn’t a single person in this room whose experience would not be improved by health services that are connected and able to safely share information about their patients.
Earlier in the day, Dr Lesley Bennett, the clinical director for Royal Perth Hospital, told me that the hospital has launched a new scheme so that patients could video-consult doctors and not have to physically travel (often hundreds of kilometres) for an outpatient appointment. She is clear that there is much more to do to harness the potential of the modern information revolution for her patients: ‘The fact is that if you are a person suffering from cystic fibrosis, for example, you basically have to move to Perth because there are no local services in Western Australia that can help you. Surely technology can solve that problem?’
Dr Bennett wants to work with the Australian Digital Health Agency to improve how patients can access services and to improve their experience and the outcome of their care – and also to give her own clinical colleagues better access to patient information through the My Health Record.
Western Australia has a distinguished record of technology innovation in healthcare. The University of Western Australia is a field leader in proton magnetic resonance research and has spun off a business – Resonance Health – that provides specialised diagnostic imaging services to hospitals across the world including London, Philadelphia, Morocco and Vietnam. Professor Tim St Pierre, chief scientific officer at Resonance Health, explains that the company provides an example of how digital information and communication technologies can be used to provide expertise and advanced diagnosis and monitoring remotely and globally.
The everyday experience of clinicians in Perth, however, is not so easy. Lenka Psar-McCabe, CEO at Perth Radiological Clinic, explains that there is no single online place a clinician can go to review in real time all the radiology reports their patient may have – they have to log in and out of all the various local provider portals to find reports and, as a result, often just re-order them. I said that a key priority for the Australian Digital Health Agency is to provide ready online access to comprehensive radiology (and pathology) reports for clinicians and their patients. ‘It’s really important that a person’s medical information – from every source – is brought together in one place’, she replies.
I had to call Fiona a few days after I left Perth to check some details with her. She paused at the end of the conversation to say that she hopes Australia will move quickly to deliver a modern health service that takes advantage of the opportunities technology offers patients and their carers. ‘We have an amazing health system in Australia’, she said. ‘I’ve seen others in the world. We really must do our best to make it better.’