Presentations from:
Mr Tom Bowden, HealthLink Ltd - Australia
Professor Enrico Coiera, University of NSW
Mr Martyn Goddard
Discussion and debate

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Industry Perspective
Mr Tom Bowden, HealthLink Ltd - Australia

The topic for this session related to the issue of 'has there been sufficient consultation' or 'is this the hole in the plan'?

There have been lots of consultations and meetings like this over the years - but has the consulting always occurred with the right people? Many of the key people are inaccessible due to their commitments and this probably applies to clinicians and consumers. There does however seem to be an understanding that more consultation is needed if consumers and clinicians are to accept the systems which policy makers and academics have determined will have benefit.

We should not pull back from our efforts to automate the sector but realise that we don't have permission or a mandate from clinicians or patients to fundamentally change the way that sensitive health information is managed. One strategy is to computerise existing processes where there are clear efficiency gains to doing so.

Healthcare providers are inherently more conservative than understood by policy makers and administrators. I draw on the findings of Dr Inga Hunter from Massey University who, for several years has been researching patient attitudes to electronic health records. 60% of consumers have no idea about how their records are stored, around 20% think all information is shared, 80% are unaware that they have a national health identifier, 50% were concerned about having a centralised health record database and if there were 20% of doctors and midwives would refuse to send some information. Patients are sensitive to negative publicity about electronic medical records, especially when they may have personal concerns about their data being shared. Hunter reports than there must be an acceptable balance between efficiency and benefit on one hand and privacy on the other. The challenge is to build systems that maintain existing trust and build greater trust if we wish to expand society's willingness to further use technology.

"The current rules surrounding use of electronic health records are not at all adequate. The only way to sell such records to the American public is to design the whole system with privacy as a priority. " Professor Alan Westin, Columbia University, Economist 28th April 2005.

"The important question now I believe is not, 'will we get it right?' but 'how can we get it right?' as failure to do so will significantly undermine, probably irrevocably, the trust that is a core part of the doctor-patient relationship." Dr Inga Hunter, Massey University.

To move forward short term gains will be made by computerising existing processes and long term gains can only be made when keeping the confidence and trust of consumers and providers at each step of the process.

New Zealand has started with basics - standardisation of pathology result delivery, electronic claiming, hospital discharge summaries, GPs exchanging with multiple players, child immunisation register. NZ is on the way to the shared record but will do so by learning from picking the lower hanging fruit.

Ways forward:
Public Private Partnerships
Automation of Primary Care
Straighten out the standards issues
Get started, consult and bring people with you.

Medical Profession Perspective
Professor Enrico Coiera
Centre for Health Informatics, University of NSW

There are lots of competing groups and views when it comes to implementation of IT systems.

What goes wrong when we don't consult - major system failure with examples overseas with Kaiser Permanente who wrote off a clinical system costing $500 million and in NSW clinicians also rejected a major clinical system.

Failures occur because we are delivering complex systems and services - IT is not the primary issue. The problem for the IT industry is that many of the process models do not reflect the messy environment in health.

The concept of consultation itself is problematic: It suggests a degree of passivity and lack of real engagement.

There are different levels of consultation. For example:
- Clinicians are interested observers.
- Clinicians are stakeholders - whenever the issue will impact in our sphere e.g. EHR standards, consent legislation.
- Clinicians are 1st class partners - e.g. whenever we are dealing with working systems, clinicians must help design the work. Forget us, and you will fail.
- Clinicians are the leaders - whenever the problem is ours e.g. in safety and quality and evidence based practice. E-Health may provide the ultimate solutions but need clinical and consumer leadership.

Where we need to focus on is where clinicians should be leading. We are sadly failing in getting health systems research funded.

The introduction of electronic decision support has introduced a new type of problem - automation bias. These systems are not produced with standards and quality built in and do not give reproducibly reliable results. Clinicians must lead on sorting these issues.

Rather than focus only on IT, the system is the problem. The majority of computer related medication errors results from people being interrupted during the process of writing the scripts. Understanding the context is critical. EDS can be dangerous and clinicians need to be trained in its use. For example it needs training to use Google.

New medical knowledge and technology is being introduced at a phenomenal rate. Much technology is unevaluated and is driving up healthcare costs. There is an incredible opportunity to harness IT to provide the data about the safety and efficacy of new systems.

Encouraging the use of electronic libraries and information resources is essential. Collectively the jurisdictions spend many millions of dollars purchasing or building electronic libraries - a practical approach would be to pool these resources under a simple national Knowledge Portal.

To create clinical leadership in health information systems requires clinicians to get together and talk; and for professional bodies like our Colleges to become involved and show leadership.

Consumer Perspective
Mr Martyn Goddard

Reflecting on E-Health, it seems that it makes very few new things possible but makes many existing activities easier. When we think about doing things with E-Health that haven't been done before or introduce new ways of doing things, we must consider what the benefits are and what are the risks. At the base of these considerations is the concept of "ethics". We may talk about privacy in relation to IT but what we are really talking about is ethics. Doctors and patients understand ethics as applied to health; it has been around for thousands of years. The central issue for consumers is "who knows what I tell my doctor" or " do I have knowledge and control over this"?

There are two glaring examples, 10 years apart, where State Governments (NSW and Vic) chose to compromise the privacy of patients with HIV infection. This led to a 50% fall in people coming forward for diagnosis and treatment of this life threatening illness. Ethics and privacy are not "politically correct" nonsense; they can kill or save lives. Such an outcome makes a mockery of the reason for the existence of the health system. It is possible to get it wrong from a policy angle and people will suffer.

The key issue is having identified health information available for use in ways that the consumer did not understand to agree to. There is of course no difference between the traditional breaches of confidentiality, a careless word to an associate or leaving information around for others to inadvertently pickup, and breaches of an electronic records storage system. Ethics would figure both equally as problems. The ethics of healthcare need to be extended and known about by everyone who is involved, staff, IT people, policy makers, even members of the Government. The idea of health ethics needs to be put back at centre stage. Ethics must be at the centre and if not systems will fail and the cost of failure is not only money but also lives and health.

Who needs to know about every aspect of a persons past history? Is the history of a sexually transmitted disease a decade ago relevant to treatment after a car accident in an emergency department. Is a history of HIV infection relevant where health workers are trained to use universal precautions against a raft of potentially transmissible diseases?

The cost of a loss or sense of control over health information is the loss in trust of the person's doctor and flowing from the health system in general. We are sometimes told it is too expensive or cumbersome to have systems which can maintain this control and trust. If so then we can really afford these systems.

With de-identified data the problems are much less. We need new approaches, however there are still limits. Some uses of de-identified data will not be acceptable. There are concerns about de-identified data being sold for profit or being used without the knowledge of the doctors and patients who contributed the information. We should look at these issues in advance. This was not done properly with systems like HealthConnect and as a result it is unlikely that they will come to pass in the short or medium term and as a result resources have been wasted which could better have been devoted to other useful purposes such as medical research. We have to work out whether we are treating someone or doing research. The idea of using information collected in treatment for research is a problem. What is required in terms of consent and ethics is different for treatment and research, even where data is de-identified.

I live in Hobart, one of the cities involved in the ongoing HealthConnect work yet I have heard very little apart from a few small notices in Medicare offices. What is going on? Much more work is required to explain theses systems to consumers, otherwise how do we gain their support. In moving forward with E-Health we need to keep our eye on the benefits as well as the risks, just as any doctor does in any treatment situation.

Discussion and debate

In the auto industry a 0.25% failure rate for brakes is unacceptable and doesn't occur, yet a 17% error rate in hospitals happens and is allowed to continue - why would this happen? (Michael Gill) This is a scandalous situation equivalent of a plane crash each week. (Enrico Coiera)

It is possible today to protect access by giving patients pins and passwords and to allow the protection of sensitive material. (Tom Weinkhardt) We might start with using these methods in small ways rather than large complex systems. (Martyn Goddard)

Some of the lack of progress in E-Health has been due to large organisations who have vested interests in maintaining the status quo. (Tom Bowden) Perhaps we should be less concerned about the rate of progress as many of the key issues from a consumer perspective have not been ironed out. (Martyn Goddard)

Adding weight to the need for health consumers and professionals to communicate about sharing of information and recognising the value of the multidisciplinary team involvement. The lack of information out in the community about HealthConnect and NETHA is surfacing in various places. (Amanda Resnen)

Great to see the privacy issues surfacing in many ways and lessons learned from both local and overseas experience. The key issue is that informed consent and choice for consumer with regard to disclosure of information. (Robyn Longhurst)

Ethics conveys an immediate sense of personal responsibility, which the concept of privacy does not. I see frequent examples where people who have secondary access to data pass on information that no-one needs to know. The duty of the prime recipient of information is clear however this seems to be less so for others who gain information as part of care down the line. With wider access to information through electronic systems we need a cultural and organisational change for those who come across this information down the chain to be bound by the same ethics as the primary recipient. (Bernard Pearn-Rowe)

With regard to change management different cultures have different approaches. What is a reward in one culture is not in another. What is valued and remembered in one is different in another. While these may seem self-evident they are not taken into account. What Australians like is a plan, honest and describing the future. Not only is there a hole in the plan - I don't really see a plan. (Michael Legg)

Role of leadership in NZ. Easier in a small country like NZ. Keen to see what NEHTA comes up with, but leadership also needed in other sectors. It is up to all to show leadership. (Mark Parrish)

Industry is a bit silent on the way it wants to see consultation. Certainly the common approach is for individual companies or industry groups to individually lobby Government. (Julie Nesbitt) Industry does find it hard to deal with all stakeholders at once. Individual consultation will occur while there are commercial interests. (Jeff Tobias) The industry roundtable found over 80 projects, heading in all directions. The idea of a single point of reference with the health department has not happened. (Paul Doman)

The Australian National Consultative Committee on Electronic Health, which formed a year ago and contains representatives of governments, industry and academics (Michael Gill) focuses on emerging opportunities and prioritising about specified topics for discussion rather than E-Health in general. It has looked at areas such as chronic illness management and Standards. A useful forum to exchange views without any one group taking the lead.

A few years ago Flinders Medical Centre was in crisis - bed gridlock and higher than expected mortality. Using a bottom up approach staff have worked up a strategy that has fixed this situation. (Bill Heddle)

Have we lost the confidence of providers and consumers and initial leaders and pioneers? (Rod Pearce) This may not be an issue as people outside the industry do not know what is happening. The damage that is possible has not happened yet. (Martyn Goddard)

HCN has been inundated with requests for product changes to meet various projects with little synergy and coordination. No vendor can produce all these solutions. HCN has spent lots of resources following these projects. Need clear goals and a plan, otherwise each vendor has to run their own course. (John Frost)

Consultation with industry has been difficult as few technologies are specifically health specific. Vital to start talking with clinicians - 100% uptake in Kalgoolie project. Important to think about technology vendors as technology consultants - consultation in the key ingredient for success. (Jeff Tobias)