The Agency will shortly be launching an Agency blog. Here is our first post from the Agency CEO Mr Tim Kelsey.
Everybody in Darwin is hoping for rain: it is heating up and a humid summer is coming. We drive along the foreshore towards Palmerston, past the mangroves that mantle the ocean. I have been invited by Dr Sam Heard to come and listen to patients and staff in his practice, the Palmerston GP Super Clinic. It is a great innovation – a joint venture between Charles Darwin and Flinders universities to give local people access to comprehensive primary care services in one setting, from medical and pharmacy through to podiatry. It has more than 100,000 patient encounters every year. It is a training centre – there are 18 registrars and 10 students and you can tell people really want to work here. This is how you learn to be a great clinician – working in teams, bringing every professional skill to bear to improve outcomes for your patients. Sam, who would never say this himself, is a globally respected expert in primary care and has championed the importance of data and technology in medicine for many years.
Sam introduces me to David who is 35 and drives through the door in his wheelchair, with a broad smile on his face. David tells me his story. He was an internet entrepreneur and ran a website that reviewed software, until his life was shattered by illness eight years ago. He went into hospital for a routine operation and was the victim of a hospital-acquired infection, and everything went wrong for him after that. At this point, David says that hospitals are dangerous places – and best to be out of them. He has had both feet amputated (as a consequence of diabetes) and has been in hospital for very long periods with a variety of conditions, including pancreatitis. This is a brave man, somebody who knows the desolation of ill health.
A year ago David met Gaby, the pharmacist who works in Sam’s clinic. David is thin today, but he was ten kilos lighter back then and was in a bad place. Sam, his GP, and Gaby developed a plan (Sam calls it ‘intensive community care’) to support David and help him get better. Every day he sees Gaby and has his wounds dressed and his meds managed. ‘Life has done a 180’, David says. Because of this intensive community care, he has not been in hospital for four months. In the previous eight years, the longest period he was free of acute treatment was two weeks. ‘Gaby treats me as a member of the family’, he comments, and you can see that this is a human, as well as clinical, relationship.
David looks at me and says there are a few things that need to be sorted out: like the fact that every time he went to hospital ‘they asked for my history and mine is so long I often forgot it. Sometimes you forget things, maybe important things. Make that go away. You go online to manage your bank accounts or your travel – why can’t I order my repeat prescription at home, or see my pathology results? Why isn’t there a digital medical record that your hospital doctor can see and share with your GP? Oh, and by the way, why can’t I manage that myself?’
Gaby adds: ‘Sometimes, as a community pharmacist, I am not seen as part of the clinical community and it isn’t always easy to get access to David’s medical record.’ Solve that too: make sure that all David’s care givers can see his record, when he wants them to.
Professor Didier Palmer OAM is director of emergency medicine at the Royal Darwin Hospital. He is showing me around what must be one of the most patient-centred and digitally enabled emergency facilities in Australia. He has patients arriving on medical flights from the bush that cost over $10,000 each. ‘They get here and I ask them why they are here and they sometimes simply don’t know.’ Most residents in remote NT communities have a shared health record that lets Didier and his team quickly access the information they need to treat them. ‘Having this information for the whole community would be invaluable’, he said.
That’s the job the new Australian Digital Health Agency has – to support David, his care professionals and their hospital colleagues with easy real time access to information in ways that suit them. Over the next few weeks, we will be listening very hard to patients, the public, care professionals and industry about how we can help them put data and technology to best use in supporting improved health and wellbeing. Care professionals want to share information digitally, safely and in real time – for example, to have a complete and accurate view of a patient’s medication history and of their pathology results, available instantly at the point of care. They want to be securely connected so that they can digitally exchange messages about a patient’s care – and abolish the fax machine. Patients and the public want to be able to access care quickly and conveniently. Many people – like David – want access to mobile technologies that can empower them to support their self-care.
Sam Heard says that we need to get the basics right. The My Health Record system is a key innovation that the Agency is responsible for – an initiative that gives citizens and their care professionals online access to their medical information so that key clinical information (such as drug allergies) is available as a person moves around the country. More than 4.1 million people have already registered, making it one of the largest digital services of its kind in the world. The My Health Record system has the potential to improve clinical safety and empower patients to take much more control of their health and care when they want to.
For all its promise, Sam and his clinical colleagues have some misgivings about the current My Health Record – it doesn’t yet do what they need it to do. These are clinicians working in the most difficult circumstances with communities that need very close support. They absolutely believe in the importance of information sharing as a precondition of high quality care, and they believe in the potential of the My Health Record system. They have given me a list of ways in which it can be improved. The Agency will work with them and clinicians, and their patients across Australia, to co-design My Health Record so that it works best for them.
David, who has suffered so much from health services that don’t remember him, offered to help as well. He has volunteered to help us design My Health Record so that it works as well as it can for him.
The history of digital healthcare – here and in every other country – has been difficult and often divisive. The foundation of the Agency offers a fresh start – an opportunity for the whole community to decide how it wants to engage with new technologies to support better health and care. It is not just about us – but also about our children. How should we build on Australia’s outstanding legacy of scientific discovery for this generation and the next?
Later this month, the Australian Digital Health Agency will be launching a community-wide call to action to engage with us in developing the new National Digital Health Strategy. In the meantime, please pass any thoughts you have on the priorities for the new Agency directly to me or my colleagues.
Thank you to Sam, David and everyone at the Palmerston GP Super Clinic – and also to Didier and his team at the Royal Darwin Hospital. We are here to listen and serve you. Together we will design a future for healthcare in Australia, which is what you and your community wants it to be.