Scenario one: A patient with multiple serious health problems arrives in emergency. The doctor calls for her medical records. It takes several hours to retrieve the paper file from storage; when it arrives, it is as thick as a brick and the doctor does not know where to start reading it.
Scenario two: A patient with cancer has a heart attack and ends up in a general hospital (one third of cancer patients in hospital at any one time are there for another health problem entirely). His cardiologist urgently needs to know about his cancer and his cancer treatment, but those records are stored in paper files at a cancer hospital across the other side of Melbourne.
Scenario three, somewhere in the misty future: Every Victorian has a card with a chip on which is recorded a summary of their health record. This card is carried by the patient and can be read in all Victorian hospitals.
The information on it is also de-identified and then used in research to track important trends that lead to illness and early death (predictive analytics). This large, anonymous database could help identify, for example, the genes in specific cancers that resist or are vanquished by particular drugs. Doctors would therefore be able to target particular tumours in particular people with individually tailored drugs, making cancer treatment much more successful. Meanwhile, health administrators would be better able to track costs and to judge where health money would be spent most effectively.
The result would not only be better health care but massive economic savings. There is nothing more expensive than giving people costly drugs that are useless. But you have to invest money to save money: such a system would cost Victoria between $250 million and $500 million.
We must embrace crucial advances and the obvious benefits that arise, or we risk being left with a 21st century cancer centre using 19th century records.
It is not just the cost that makes political leaders wary of e-health. There is the troubled history of massive IT roll-outs around the world; the UK, for example, spent billions on electronic health records but its proposed system failed. And there are the privacy concerns; again in the UK, administrators made the fatal error of selling electronic patient records to a drug company, destroying public faith in the system’s ability to protect their privacy. It is neither the state’s responsibility, nor its right, to give away citizens’ personal information.
But neither of these issues needs to be a problem for Victoria. Firstly, with 5.6 million residents, Victoria is the perfect size to avoid the pitfalls of previous international IT roll-outs that have crashed and burned. Such systems tend to fail when the number of people they cover exceeds 10 million. Five to ten million is the optimum size of the group. We are not sure why this is so, but it is the pattern worldwide. This is one of the reasons it would be better for Victoria to roll out its own e-health system rather than wait and hope that the Federal Government takes the issue on board.
Secondly, the legislation governing any Victorian e-health program could provide watertight protections for patient privacy. The e-record has to be under the patient’s own control. It is not the hospital’s. It is not the doctor’s. It is not the department’s. It is the patient’s. That is the price that must be paid because without that guarantee, patients will never cooperate with such a system. We live in a democratic society that values the rights of the individual and they must remain protected.
But many of the same people who would be appalled to know their information had been sold to a drug company would be quite happy to consent to have their de-identified health record information used, for example, in breast cancer research.
NSW is ahead of Victoria with e-health, with a unit devoted to exploring it and $25 million allocated to researching it. In Victoria, individual hospitals are investigating, and sometimes setting up, their own e-health record systems, but there is no guarantee that these multiple systems will be able to talk to each other.
Certainly there may be some nervousness given that IT projects of this ilk have been a problem for the state in the past. But we must not allow this to hinder embracing crucial advances and the obvious benefits that arise, or we risk being left with a 21st century cancer centre using 19th century records. We need to look to states like NSW who have boldly pushed ahead and capitalize on lessons learned.
If we are to keep up with developments in patient care, and if Victoria is to protect its treasured position as Australia’s leading centre for bio-medical research, the state needs to commit to an e-future in health.
Professor Stephen Smith is the Dean of the Faculty of Medicine, Dentistry and Health Sciences at the University of Melbourne. He has been a pioneer in developing integrated health and research strategies at several leading British medical institutions, including Cambridge University.