Presentations from:
Mr Philip Bullock, IBM Australia
Dr John Aloizos AM, Australian Health Information Council
Ms Heather Grain, LaTrobe University
Debate and discussion

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Industry Perspective
Mr Philip Bullock
CEO and Managing Director, IBM Australia and New Zealand

While not an expert in health, I do have 25 years of experience in the IT industry and have seen technology transform a number of industries - acting as an enabler of profound change. In every case, the key to that industry's transformation was not technology, but rather the propensity of individuals to want to change and the collaboration of the industry in agreeing on a common goal.

The best IT systems are integrated, built on standards and allow information to be transferred on a need to know basis so that decisions can be based on all the information. The Australian health care system has many excellent components however if it were a brain, it would have millions of smart neurons, but no central nervous system.

To reap the benefits of the information age - you need a central nervous system. We have learned this from other industries. Over the last five years, IT has helped banks build a central nervous system that connects their customers to all their financial information. Your internet banking page holds the details of your cheque account, your mortgage, your credit cards and your car loan. These financial products are managed by different parts of the bank in different parts of the country, and different parts of the globe in many cases - but you can see them in real time and switch funds between them at the touch of a button - because there is a central nervous system connecting them and this is done in a very secure way through the internet. Some of the information is internal to one bank, and some involves the exchange of information between different banks.

The potential for a connected system is to leverage the hundreds of thousands of daily healthcare interactions. These generate new information about what's happening with the individual care of a particular patient, and also on health outcomes such as drug effectiveness and side effects, on the best course of treatment, the risk of disease, the spread of epidemics. This information is hidden and not available now because we don't have a central nervous system to connect it.

To give you a simple example: a person is admitted to Canberra hospital suffering from anaphylactic shock, then three weeks later is admitted to a hospital in Melbourne suffering from another, more severe, attack. If the patient is able to tell the staff about the previous incident, it is all well and good but even then there is no guarantee that the information required could be sourced over the phone. One vision would be to access this patient information automatically. The IT industry's vision for e-health in Australia is a system where we have electronic health records that link all of a patient's medical data and picture archiving and communication systems to store images from X-rays, MRIs and CT scans. So if I get taken to emergency the registrar on duty knows I'm allergic to penicillin and has access to the x-rays I had a year ago when I broke my wrist.

Other components of our vision for e-health will see doctors having access to Clinical Decision Support Systems to help manage the avalanche of new medical information. Researchers will be able to aggregate data on treatment outcomes to improve our understanding of adverse events, disease patterns and what works in preventative medicine.

This vision is happening now and is available in some countries. Denmark has an IBM managed central nervous system for the health care sector dealing with IT system management leaving the health care institutions to concentrate on managing the clinical outcomes. In England, the National Health Service is five years into its ten-year plan to implement a national patient-centric information service that will modernise and link regional systems and connect them all to a central nervous system. In the process it is modernising patient record processes for every citizen in the entire country. In New Zealand, web-based cardiovascular disease risk assessment has replaced paper charts and similar systems are planned for diabetes risk assessment. The aggregate information the system collects is helping health officials develop risk profiles for different parts of the population.

In each of these countries, better information management is improving clinical outcomes and also reducing costs. Consolidation of disparate systems support managed information flow, lower operating costs, and resource transfer to more important areas. These are lessons learned across multiple industries.

Creation of a health central nervous system may not require massive investments in infrastructure and the technology exists today. Technology is not really the issue which involves policy, leadership and change management where individuals and organisations to support a common goal and collaborate in implementation. We need a consistent approach from policy makers that encourages the system to develop local and regional networks that can exchange information. We need an approach that continues to set standards and rewards integration and collaborative care.

Medical Profession Perspective
Dr. John Aloizos AM
Australian Health Information Council

We have to focus on areas where clinicians are affected by information management and need to show leadership and be involved.

Privacy is a central issue, identifiers are essential. Unresolved issues include the idea of "opt in" or "opt out". The health record starts with the system used by clinicians. The idea of the shared record has not and will not happen quickly and if issues such as privacy are central to whether this will ever happen.

The quality and safety of our information systems depends on standards. The National E-health Transition Authority is now tackling issues that should have been delivered long ago. What the profession asks is that NEHTA adopt a consultative approach. Information technology has the potential to bring together knowledge resources and guidelines essential for clinical practice, and again is an area where health professional input is essential.

Electronic decision support has been on the national agenda for some years with a workshop held in this very place some 2-3 years back. While a little progress has been make we still don't have sufficient focus on this and the standards required to support the exchange of this knowledge and reliable operation of EDS systems. There is much potential in supporting chronic disease and medication management. These can have big impacts on outcomes. A framework for evaluating EDS system has been developed but not yet used. Clinicians have to become better informed about the potential for EDS and play a large part in decisions about its use and integrated into workflow. How to use the computer in consultations with a focus on patients is yet to be fully worked out. Health is different to banking or transport and differences need to be respected. The impact of EDS on the medico-legal boundaries needs to be considered.

It is not yet clear whether we have the right systems and configurations to meet our needs. Reducing duplication, paperwork and red tape are key issues for improving efficiency through the use of IT. Standards to improve connectivity are essential. Service and support is critical for the medical profession. In the past we haven't invested much in the change management required. Information systems must take into account the business models and variation that happens in healthcare as well as the clinical models. The medical workforce is a "sleeping" issue which will impact on the use and need for information technology.

We are waiting to see what tangible outcomes will emerge from the changing face of HealthConnect, in future it would be useful to be more focused in such projects.

The use of health data for research is a key issue. It is paramount to protect patient privacy through the use of de-identified data. If health information management is to progress, health systems need to develop a culture of research with a focus on improving outcomes - after all that is what really matters.

Consumer Perspective
Ms Heather Grain, Lecturer in Health Informatics
LaTrobe University

There are millions of consumer perspectives with many commonalities. Consumers are the reluctant champions of e-health, are now more informed and comfortable and willing to explore the potential. So much so that many consumers assume that e-health is already working - they get frustrated saying their history again and again.

Say it once and share accurate information. Not all information has to be shared, only what is relevant and where it is relevant. Consumers want to be listened to and not have information lost. The different parts of the system focus on their small part and it is often left to patients and carers to ensure that whole picture is kept together. Current IT systems are adding to these institutional barriers.

We have to know what we want to know and when. Avoiding information overload. Who determines what is relevant and that information will be shared. Consumers need to know what has been passed on and what hasn't. There are huge costs borne by carers in time and lost productivity undertaking this coordination and information sharing role, because the health system doesn't. We must start communicating not only between groups but within groups and organisations.

A personal and recent experience:
My mother went into hospital for investigation of cognitive impairment and soon after arrival had a stroke. Her initial problems were shelved while the new ones sorted, however the information about her original problem did not get passed onto the rehabilitation service. She couldn't do her physio and no amount of trying on the part of her family could get this information heard. She was discharged to a nursing home, however her GP wasn't told where she was located and some anxious time was spent trying to track the old lady down. For all the GP knew she could have been lying incapacitated in her own home. The hospital continued to send her outpatient appointments to her home, where there was no one to get them. She missed 3 appointments, a real waste of resources. The new GP looking after her in the nursing home had no idea who was her usual GP and how to source her medical history. My mother couldn't tell him. Surely fixing up this type of problem is not rocket science. We have the ability to communicate this stuff electronically or in other ways; what we haven't done is really think about the importance of these issues and the systems that could fix them. We could begin somewhere like this.

Access to information and privacy is a major ongoing concern. The real challenge is getting on and doing something about issues like this. Making a start. Begin with the simple tasks that will help inform the rest of the process.

We need to develop a mutual respect, start simply, make progress in small ways.

Discussion and debate

Healthcare is a series of autonomous networks and is quite different from banking and industry. During the long journey to get to the EHR perhaps we should concentrate on intermediate issues eg. aged and chronic care. (Michael Gill)

With regard to sharing of information there is certain things which consumers would expect to happen e.g. sharing the address a patient's new nursing home, and other information which requires consideration and agreement. (Heather Grain)

Regarding the vision of the use of standards, Australia is well progressed both locally and internationally - at International Standards Organisation and HL7. Our experts are internationally recognised - but often less so at home. (Heather Grain)

What drives cultural change? The major cultural change which drove information change in banking was the need to be customer centric, bringing together all the customer information for one bank in one place. (Rod Pearce)

Medicine is practiced differently in different circumstances; there is a danger that e-health may lead to prescriptive practice. Doctors should be free to choose whether to use e-health technology and it up to patients to choose which doctor they go to. E-Health expands the opportunities. (George Margelis)

Consumers need to have access to their record and want to have the capacity to add to their record and decision making around their records. (Helen Hopkins)

In health there has been a paternalistic attitude to health records and no real culture of patients holding their own information. Perhaps a short term way forward is the use of patient held records using media such as USB drives. (Marissa Lassear). OpenEHR is working on a patient held record "LifeKey" which draws on the OpenEHR structure.

The believers in the potential for the EHR to improve patient outcomes and communication assume that there is a core set of data that can make up this record. The culture of medicine sees the record as an "aide memoir" rather than a valuable tool. This culture which undervalues the EHR is major part of the problem of moving to improved records systems. (Helena Britt)

The advantage of the 'aide memoir' was that it is time efficient. It takes much longer to do EHR via the computer. The benefits need to be there. The vision is to see a patient at any time, anywhere and to have relevant and accurate records accessible. The consumer needs access and to be involved.

We do not need to impose the detailed structure of the record. Core elements are current problems, alerts and allergies and a list of others. OpenEHR is an emerging international standard for the structure of the EHR (Peter Schoeffel).

We have not yet defined a vision, talking around the edges. Is the current smartcard debate focused on using it as an EHR management vehicle or as a system for secure identification? One vision is to put the patient at the centre and link providers to the patient record, not the other way around. This can be done now with the internet. There are potential dangers for patients and providers with access to a wide variety of patient data that may not be relevant through a centrally managed system. Patients can manage access to their records and be accountable and more engaged in their own care (Tom Weinkhart).
Where is the vision held by the Government, and what the industry expects of the budget. Firstly industry expects a role in funding the infrastructure. Can't apply business principles to healthcare, so it is inevitable that the Government sector will be involved and take some leadership. At present, the Government vision is a shifting sandhill. We need to consolidate what has been achieved. There is no sense that the various layers of government and states have a process for agreeing on a way forward. There is a lot of disconnected activity, both within organisations and between them. We need a better understanding in the states of the rest of the system outside their hospitals and community health centers. (Teng Liaw/Health Grain)

The vision for e-health is artificial. Technology is well entrenched in health. Everyone has a different vision for e-health. A vision is immaterial as 'e' is already in health. We need to push the debate now to what is the benefit of each component e.g. EHR, connectivity. (Geoff Tobias)

We need to think about what consumers need, rather than what doctors need. This shift has not struck home.

GPs want discharge summaries - what is the problem? (Julia Nesbitt)

It is difficult to manage change when you don't know what change is required. It is difficult to share an electronic record when you keep your own records on paper. There are a lot of systems and trials working; what we need to do is to define which bits we need to take forward.