Is the e-Health Initiative healthy?
Tim Warner Should you visit a Medicare health practitioner in the second half of 2010, you will be asked to identify yourself from a list of persons who have similar names and birth dates. This will be the start of a new medical records system called the e-Health Initiative, designed to allow the smooth electronic referral of patients, patient records and the orderly transfer of pathology results. This unique identification system will rely on a number that will be generated when you appear for an appointment after July 2010, and will not be stored on your Medicare Card — it will be kept in a separate computer system which will be the hub of the doctors, pathologists and so on. The new number is required because many Medicare cards cover a number of individuals in families or households, and this new system is designed for clinical use and will therefore have to be patient-specific. All of the above is happening and many of the planned direct outcomes in improving patient records and reducing clinical errors can be welcomed, but the mechanisms chosen to deliver these outcomes, the method chosen to administer the scheme and possibly the actual outcomes have serious downsides. The second pilot scheme for the referral and management of patient records has been running in the Hunter Health public health service of NSW. This follows a very troubled first pilot in Tasmania where many practical failings of e-records became apparent. Two large problems were the lack of consistency in recording illness between doctors: what one sees as a cold, the other will write up as a minor upper respiratory tract infection. In the delicate issue of social diseases some doctors either use personal codes or misdiagnose an illness with a similar pharmacological treatment. The second major issue was that many people have multiple Medicare identities many for reasons of personal safety and legal invisibility. How to handle this became a significant issue. The second trial at Hunter Health has been under way for more than a year. It is slated to have a public release of an interim report in March to April 2010. Here we reach the first major problem in process. The federal and state governments are scheduled to pass the enabling legislation for e-Health in February to March 2010 — before we see the results of the final practical trial. Without information from the Hunter Health trial and with some key issues not even included in the limited trial, we are setting forth on a national and expensive scheme, without knowing if it will deliver the key outcomes. Will it reduce patient misidentification or wrongful diagnosis due to lack of or wrong prior history by significant amounts? The second process issue is the lack of continuing information on how the federal and state governments have been reaching each stage. Juanita Fernando of the Australian Privacy Foundation has been demanding the opening of various reports since 2005. The Australian IT section has had many articles, including some leaked papers, that show a culture of secrecy and a lack of accountability. The methods chosen to deliver the e-Health Initiative contain all the elements of a national identification scheme. Every adult will be identified and their medical details and contact details will be linked. The first stage has all medical practitioners moving to storing their records in a form that is consistent and searchable by the new number. Later external searches of practitioners’ databases will be possible to ensure up-to-date clinical information at the venue where the patient presents. Many of these details are not confirmed but are inherent in the design proposed. The possibility of function creep, both within the Health and Social Security Department and in ‘whole of government’, is very real. No attempt at placing limits on the information to be gained is included in the design. The final key process failure is one with massive implications for many of the proposed public policy initiatives, including the changes to hospital and clinical delivery. The driving force behind the e-Health Initiative is not the Federal Government as such, but the Council of Australian Governments. COAG is the formalising of the old Premiers Conference where money and responsibilities for national issues were debated and allocated. It now has grown to have an independent existence and as such is not directly answerable to any of the constituent parliaments. The e-Health Initiative has been structured as a company owned by COAG, and thus not under Freedom of Information or other responsibility mechanisms of either state or federal jurisdictions. Each request for information or transparency is met with an answer couched in terms of the others agreed to it. Each criticism of process or inadequate outcome has been met with the other agreed to it. Direct request for information or accountability are met with a reply that they do not have to respond as they are not covered by federal or state FOI. The e-Health Initiative is a very worrying piece of public policy. It is in effect the structure of a national identification scheme. Future uses and expansion of the system are being designed into the system, whilst those implementing the system claim they have no mandate to discuss wider future uses. The actual efficacy of the scheme is in doubt and laws are to be enacted before proof has been made public. The vehicle chosen to implement the system: a company structure owned by an arm of federal–state consultation, which has no methods of answerability or responsibility to the public. The best that could be said of the e-Health Initiative is that Sir Humphrey would be proud. Tim Warner is a Liberty Victoria committee member.