PCEHR as a catalyst for change
At the opening plenary session of the Health Informatics Society of Australia’s HIC 2012 event, a couple of unusual things happened. Not long into the speaker’s talk, plenty of us in the audience had tears in our eyes: probably not something you’d expect at a conference about health informatics. And there was a standing ovation.
When the speaker finished, the packed auditorium clapped as one, and then everyone was standing. The clapping went on for a while. But it wasn’t an applause of celebration, it was an applause of shared understanding, support, and appreciation.
The speaker was Regina Holliday. She is an artist and an advocate for consumer access to information generated by healthcare providers. In 2009, her husband succumbed to kidney cancer. The story of his illness and journey through the healthcare system is hard to hear. While they had some good doctors and nurses, there were others whose communication skills and esteem for holistic care was not up to par (in particular, an oncologist who thought so low of her plea for him to explain what was happening to her husband, he dismissed her as a “type A personality”).
But while the humans were variable, the systems they encountered, both IT and organisational, were consistently inadequate. Her struggle to get access to her husband’s medical record was a shameful battle. It wasn’t quite Orwellian, but it was bad enough. Each page cost 73 cents, and there was a 21-day wait. Ms Holliday and her husband were set adrift in an unfamiliar healthcare milieu, without any data lifeline.
She is now using her experience to encourage change, telling her story in her blog, and by joining with other patient advocates such as e-Patient Dave. Recently, she represented consumers at hearings for the design of the Meaningful Use policy. And she created the Walking Gallery: painting pictures onto wearable jackets of concepts related to patient access to data.
Ms Holliday is an American and her trip to HIC 2012 was her first overseas. While I’ve seen a number of graphs showing how far behind ours the USA’s healthcare is overall, understanding the situation is much easier when a story is told by someone who experienced it personally.
Ms Holliday portrayed a country offering bleak prospects for those who find themselves cast into its healthcare system without substantial financial resources. That as an artist she found artistic inspiration from her experience reminded me, ominously, of how art and innovation tends to flourish when people are oppressed.
Australia’s healthcare is measurably better than the USA’s, but the level of information sharing is arguably not. And Ms Holliday’s talk was a powerful reminder to the Australian eHealth community of why it’s important to address the problem.
What does this imply for the PCEHR? The PCEHR had a painful birth. Should it have been so? How much fear and negative spin would we have avoided if people like Regina Holliday had been front and centre, telling their stories, and explaining the need? If the prominence given to cranky curmudgeons and agenda-driven media, uncritical of their own criticism, was instead transferred to consumer advocates?
Hiccups and problems with the PCEHR have happened and will continue to happen. In the first week after it went live, those with a hyphenated name discovered they were blocked from registering.
And the PCEHR is not immune to errors made upstream, as Kate McDonald from this publication learned when she found records in her PBS feed that belonged to someone else.
But the core technological design doesn’t appear to have attracted much criticism. Partly, this might be because many critics seem to have failed to grasp what it actually is. There are multiple perspectives of the PCEHR and the system that hosts it, the national eHealth records system.
One is that the system is an index of documents, built upon a web services infrastructure, an enterprise service bus, which can drive third-party innovation. Even if the critics did understand this, I’m betting they’d be hard pressed to make a strong case for any fundamental flaws in this concept. It’s industry best practice.
But the PCEHR also appears to be a catalyst, a consolidating vision. Much recent progress is the result of millions of dollars of funding, but the fact that progress is being made – in a domain where progress has been glacial for decades – is exciting enough.
National specifications are now being used outside of pilot sites to enable interoperable information exchange. Adam McLeod, the project lead at one of the first Wave sites, said that he’s already seeing this happen. Soon, he said, the early adopter sites will have the capability to send discharge summaries, GP referral letters, and specialist letters (point-to-point and to the PCEHR). This is a major step forward.
Misgivings about PCEHR
According to the 2008 National E-Health Strategy, it wasn’t supposed to happen quite like this. The strategy’s ideal was the incremental development and refinement of robust standards that would improve information flow. Over time, distributed individual electronic health record (IEHR) systems would be built, and providers would start sending information to the IEHRs.
Eventually, we would be able to bring together and summarise a patient’s IEHR records into a national consumer portal. But standards development and adoption in a formidably fragmented environment aren’t straightforward tasks. Progress was achingly slow. In 2010 the National Health and Hospitals Reform Commission flagged a national eHealth records system as a priority. Funding for the PCEHR was subsequently announced.
I wasn’t the only one to have early misgivings about the PCEHR. It seemed too soon. We weren’t even close to technical interoperability, so how could we hope to achieve the holy grail of eHealth, a shared electronic health record? And the sure signs of failure coming from the UK National Health Service’s National Programme for IT (NPfIT) – going the way of most big IT projects – didn’t assuage the unease. The PCEHR was more big IT. Doomed from the beginning.
But is it? Big, I mean.
Australia is far outweighed by the US, UK, and Canada in terms of its health IT spend, and the PCEHR is not a comprehensive bells and whistles thing (on day one it was an empty shell). It has a lot of room to grow. If you take the above description – that the national system is an infrastructure platform upon which others can develop innovative solutions – then that seems relatively small in a conceptual sense.
The big task the system takes on is the secure storing and serving of indexed data. The really big tasks in health IT – the recording, coordinating, and presentation of complex structured and unstructured information, and particularly the point-to-point exchange of interoperable documents – is left for others to develop, based on the emerging standards the PCEHR seems to be driving, if not always in a straight path.
I’m still not sure if the PCEHR is big or small, but irrespective of the ‘PCEHR: folly or fab?’ debate, it seems that the visible progress is generating hope in the eHealth community. The early adopter sites had a lot of money and support, but the important point is that everything they’ve done is transferable. Other sufficiently resourced (and motivated) health services and vendors can create their own artefacts from the same pool of commonly shared specifications.
Another opening plenary speaker was the secretary of the Department of Health and Ageing, Jane Halton. In her speech she told some stories of her own. The Northern Territory has one of the biggest shared electronic health record systems (SEHR) in Australia. It started about five years ago, and use of it was initially quite low, but access has increased exponentially, particularly over the last two years.
Ms Halton related a couple of tales where patients’ lives had been saved because of the SEHR, and she said many staff in the NT health system had seen beneficial outcomes because of it. If the NT experience is transferred to the national via the PCEHR, then we can expect significant benefits.
But it will take a while. Nigel Millar was at the conference to tell us of his experience implementing a nascent SEHR in the wake of the Christchurch earthquake. The experience proved to him the SEHR’s enormous benefits. He didn’t recommend having an earthquake, but he did recommend pretending we’ve had one. As long as we never stop asking patients how they are and what they need, Dr Millar said, we’ll ensure systems will be effective.
As Ms Holliday says, we are all patients in the end. We will need records to manage our care. And we will need to have some control over them – the reverse of the old, paternalistic healthcare paradigm.
I don’t think health IT system development can always be easily definable. It’s usually not a purely rational exercise – it’s too complex, and there are too many competing interests and views.
We need to be open to the instinctive and the subjective. I think patients and clinicians who can tell compelling stories should be sought after and listened to. And who knows? Perhaps there’s even room for some artistry in the field of health informatics.
HIC 2013 officially begins in Adelaide tomorrow.
Brendon Wickham is an eHealth Program Officer at NPS MedicineWise. He has a Masters of Health (eHealth) from the University of Tasmania and has been working in the eHealth domain for eight years.
Posted in Australian eHealth