The mobile consumer a highlight at HIC2012
It may not be very often that the US National Coordinator for Health Information Technology, Farzad Mostashari, is left speechless, but that is exactly what happened to him when he sat on a panel with a bright young woman who has since become one of America’s leading patient advocates. Regina Holliday is an artist with a story to tell, and this she does with remarkable passion and insight.
Louise Schaper, CEO of the Health Informatics Society of Australia (HISA), the organiser of HIC, says Ms Holliday is one of the most powerful public speakers she has ever heard. It was Dr Schaper who witnessed Dr Mostashari struggling for words upon first hearing a short excerpt of the young woman’s story, something Australians might also experience when Ms Holliday appears at HIC.
“Regina is one of the best public speakers I have ever seen,” Dr Schaper says. “I went to a Health 2.0 conference [in the US] and she was on a panel. Everyone got a five-minute spiel, and she spoke first.
“Second up was Farzad Mostashari, who is the most important person when it comes to eHealth in the US, and he was just staring. He opened his mouth a few times and was speechless. He said Regina was a tough act to follow.”
Ms Holliday’s story is unfortunately not an unusual one. Her husband was diagnosed with renal cancer in his mid-30s, and like many he was shuttled from one hospital to another. Over the several months from diagnosis to his eventual death, he was a patient in five different healthcare facilities, none of which were linked and none of which spoke to each other.
Tired of repeating the same information and suffering through the same tests, Ms Holliday asked for a copy of his medical record. She was told it would take 21 days and cost 73 cents a page. She believes that had there been an electronic record that all of his carers could consult, his treatment may have been better and perhaps his death made more comfortable.
Ms Holliday now spends her time raising her children and acting as an advocate for both patients and electronic health records. She is also an artist, and while it may sound a little kooky to clinicians and health informaticians, she will be painting a mural throughout HIC with an eHealth theme.
“She has created something called the ‘Walking Gallery’, which is the idea that you have a jacket, a normal one you’d wear during the day, with a Regina painting on the back of it which tells a patient story, often with an eHealth-related theme,” Dr Schaper says. “It is hard to get the patient voice out there. The idea is that by wearing the jacket, you become a mobile art gallery and opportunities arise to tell the story.
“It is usually a patient-driven story about the influence of health information, the importance of patients having access to their information, and as a consequence the doctors and nurses and other healthcare professionals having access to the information so that everyone involved can help to make sure your journey in the healthcare system is hopefully a short one, and that your journey will be as positive an experience as possible.”
The theme of patient advocacy, patient mobility and a patient-led view of future healthcare is a very deliberate one. Greg Moran, chair of the organising committee, believes that healthcare will change not from within, but from without. The overall theme of the conference is “building a healthcare future through trusted information”, trust being the common ingredient in healthcare transformation through enabling technology.
“Trust is required to gain the adoption and the use of technology whether implementing clinical change, building integrated care models, or delivering smart patient programs,” Mr Moran says. “It is also required to enable greater patient participation in healthcare.
“I think that healthcare is ultimately going to change through the external drivers. In healthcare, we try to do a lot quality improvement internally within the sector, but the many people I interact with, particularly the experts, are all talking about fundamental changes in the way the world operates and therefore healthcare operates. Mobility in particular – the use and pervasiveness of consumer technology and the innovation that will occur once the standards are set and routinised – there is a general sentiment that there will be a shift in the way that the healthcare system will work.”
Q&As on consumer mobility and trusted information
The HIC organising committee has put together two Q&A panels to discuss these emerging themes. The first, hosted by Stephen Alexander, will discuss the impact of mobile technology on healthcare. The panel will feature US representatives who can provide insight into the way Australia’s health system is likely to change in the next couple of years, including Matthew Holt, co-chair of Health 2.0, Iltifat Husain, founder and editor of iMedicalApps, and Rajiv Mehta, co-organiser of the Quantified Self movement.
The second panel, hosted by the ABC’s Tony Jones, will discuss doing more for less and the importance of ‘trusted’ information. This panel will feature Ms Holliday, NEHTA CEO Peter Fleming, HISA board director David Rowlands and Scot Silverstein, an adjunct professor of health informatics at Drexel University in the US, who has personally experienced the downside of electronic health information systems.
Mr Alexander is a prominent expert on the power of information technology, who encouraged the first bank in the UK to allow consumer transactions over the internet. He has worked in the UK, the US and here in Australia advising governments and industry on technological change. In his panel session, he hopes to achieve a consensus on some overarching principles about consumer mobility in healthcare and to feed that back to policymakers.
“Let’s say there is view that health consumers will lead innovation,” he says. “Would the panel agree that innovation and drivers of changes will be consumer-led, and if that’s the case, will mobility be the next thing that creates a tipping point to enable that consumer initiative, that consumer drive for change? Will that cause a tipping point in Australia?”
Mr Alexander certainly believes it will. “I admit I’m biased in my view on this but my task is to find out whether there is a genuine consensus of opinion on that or whether there are any gaps in that thinking and what they are. For example, there are some views out there that we can’t afford to replace the systems that don’t work in health today. And if you can’t afford to replace them, then can the adoption of mobility solve some of those problems?
“For policymakers who aren’t IT experts – and being one might not necessarily assist them anyway – can they grapple with this new phenomenon and feel confident to leverage off what is happening?”
One of the main reasons for finding a consensus on which policymakers can then be advised is due to what Mr Alexander identifies as the elephant in the room. While most people working in healthcare know that there is a rapidly diminishing pot of money on which to spend on healthcare in general, this might come as a bit of a shock to consumers themselves.
“The problem is, no one can talk about the elephant in the room, which is that healthcare is no longer affordable by government,” he says. “We are past that point, so the real tipping point is when the population starts to find out. In the UK, they are already talking about the formal rationing of health services, and we are not terribly different in Australia.“Mobility will play a much more formal role through its ability to alleviate some of that problem, but the real endpoint and the one that I’m most excited about is through the collaboration groups, we can shift to evidence-based clinical decision making rather than product-based.”
Those collaboration groups are exemplified by representatives on the panel from the US, where patient advocacy is truly a grassroots movement, and by the experience of the UK. He points to the NHS Expert Patients Programme, a project originally developed by Stanford University, that aims to teach patients to learn about and manage their conditions, particularly chronic illnesses.
“Unlike the peak body groups that claim to represent people with conditions, these are actual grassroots,” Mr Alexander says. “They train them on how to manage their condition better. The hard figures were a 30 per cent reduction in hospital admissions, a 42 per cent reduction in hospital stays and about 29 per cent in GP visits. Show me a drug that can do that.”
The other elephant in the room
There is little doubt that the PCEHR will be a huge point of discussion for all attendees, with its official launch happening just a month before the conference is held. Putting aside the fractious politics behind its development and the arduous journey it still has to undertake, the PCEHR is one formal step towards the interconnected world that is rapidly bearing down on Australia’s health systems.
While some have criticised it as a typical, big government foray into managing technological change in a brave new world, Mr Alexander, like many others, believes it will be a catalyst for further change, and change that needs to happen. He is not afraid to say that the decision to make the PCEHR personally controlled was actually a very shrewd move.
“Setting aside the manner in which it is being done, my interest in the PCEHR is that it has a B2B exchange, it has a governance model and anyone with half a brain will work out how to build an app around it,” he says. “Not only that, but you have a commitment from each of the jurisdictions linking up similar software by Christmas.
“They have to do that in order to start to link that back to PCEHR and do discharge summaries. As soon as you have that ... what I suspect is required next is you are going to have to get collaboration with the vendors and with the major providers to look at how to exchange information more to do with coordination of care.
“The fact that this thing is built, you have to take your hat off to them. It doesn’t matter where it goes or what it is meant to do; I see that once you start having the capacity to join up other data systems, let say in aged care, mental health or chronic disease management, around coordinated care, that’s going to go like a rocket. That is all about empowering individuals and their advocates to do things better.
“And there is a second wave coming behind it. They called it a personally controlled electronic health record – that comes from DoHA and that is the shrewdest thing going. The next battle is that if you want to control stuff, then you have to be responsible for it. Having it personally controlled by the consumer is the only way.
“The PCEHR governance structure is a precursor and therefore the catalyst for this broader eHealth agenda and I think some of the smarter vendors are already on it. And once you move into app world, by default everything is connected, and by default you can do connected analytics, which means you can do stuff in real time and that changes the rules. You are going to change everything.”
HIC program at a glance
The three days of the HIC conference will cover three main themes. Day 1 concentrates on eHealth drivers and demand. “It really is a matter of health informatics enabling us to do more with less,” Louise Schaper says. “There are some in the health system who will say, with very strong conviction, that healthcare doesn’t need any more money. Day 1 we are going to take this idea out for a spin.”
According to the chair of the organising committee, Greg Moran, the theme of healthcare drivers and demands will cover the consumer angle, featuring Regina Holliday; the cost angle, with a speech by the deputy commissioner of the Productivity Commission; and healthcare responding to natural disasters, which a presentation by Nigel Miller, the chief medical officer of the Canterbury region in New Zealand, which was devastated by last year’s earthquake.
“The intent there is really to say we have to change, we can’t keep doing things the way we do them,” he says. “There is a whole range of things that can be introduced into healthcare which will increase productivity and provide better care. That is why it is topical, complex, and exciting.”
These disparate themes will then be brought into an Australian context by Michael Bainbridge, Mr Moran says. “Mike’s role will be to bring some reasonably disparate presentations around consumer health, cost and the natural disasters to a general rounding theme. What does it mean for healthcare?
“While Regina will set the tone, she’ll present very much as an American healthcare advocate, which doesn’t always translate for Australia, so one of Mike’s roles will be to bring it back to Australian relevance.”
Day two will be dedicated to a more traditional theme of evidence and outcomes and how to put evidence into practice. “While these themes may be traditional, the program is set to discuss this at a deep level, to really look at not only how new knowledge gets translated into clinical and information practice, but how does evidence influence health policy,” Dr Schaper says.
“When you look at the policy side of things the stakeholders have evolved over the years and consultants have increased their role in providing advice to government. How does this influence getting evidence into practice? How does the consumer voice get represented? With all these voices, who has the most significant influence? These are themes and questions that will get teased out during the day.”
A Q&A panel on day two, moderated by business consultant Margot Cairnes, will discuss how to build on research and evidence for immediate healthcare improvements. Panellists include foundation chair in medical informatics at the University of NSW, Enrico Coiera; AMA president Steve Hambleton; NEHTA’s head of strategy John Zelcer; and professor of public health and community medicine at the University of Sydney, Stephen Leeder.
Day three will concentrate on the future, with a plenary speech by Rajiv Mehta on how the best health technologies and collaboration minimise the need for professional health services. Mr Moran describes Mr Mehta as being passionate about consumer technology and open source development.
“He has created a community of interest where people can share their own knowledge, their development tools, to build upon the knowledge within the system to get better outcomes commercially, professionally and I think there is a social benefit to it as well,” Mr Moran says.
“The collaboration theme will be continued through the day, including a dedicated workshop facilitated by Denis Tebbutt which will explore the critical elements of collaboration and relationship management to enable transformational reform in healthcare.”
This day will also feature a Q&A panel, moderated by Dr Schaper, on whether Australia can lead the world in digital healthcare. Panellists include Fernando Martin-Sanchez, chair of health informatics at the University of Melbourne; NSW Health CIO Greg Wells; Lee Ridoutt, a consultant with Health Workforce Australia; and Lucila Ohno-Machado, associate dean for informatics and technology at the University of California, San Diego.
HIC2012 will be held in Sydney from July 30 to August 2.
Posted in Australian eHealth