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An elderly lady recently related a touching story on ABC talkback radio. Her husband of many decades had just been diagnosed with an incurable brain disease, and transferred to a hospice. In considerable distress, she told of receiving a letter from an estate agency she had never contacted nor had previously heard of. The gist of the letter was that it had come to the estate agencys notice that her husband was about to expire, and she might therefore want to sell her house. Did they have an estate agency for her!
This may seem a small if poignant incident in the big picture of privacy issues arising out of todays aggressive commercial combativeness and the associated explosion in networking computer data banks. But it reminds us of how intensely personal and deeply emotive peoples private information can be, especially when it involves their and their familys medical treatment and health status.
Such reminders are salutary. Todays entrepreneurs see gold in commercial commodification of medical information. Many of those caught up in the ideological environment of economic rationalism see no any reason why the populations medical history should not be converted into yet another commercial product, to be harvested and sold in rational economic fashion.
Post Cold War capitalism has its social psychology. Neo-liberal ideology undermines social sensitivity as well as social values. If, for example, estate agencies, funeral parlours, and assorted other entrepreneurs were to have access to hospital palliative records, couldnt they more speedily bring services to those who will almost certainly need them? Efficiently targeting their marketing to those most in need, and mostly likely to buy, could reduce the cost of services. In the socially blinkered eyes of the economic rationalists, how could that not be in the consumers interest?
New privacy law
When the Howard government announced its intention this year to introduce the Privacy Amendment (Private Sector) bill, the AMA claimed the legislation would radically change the way personal health information was collected and managed.
The AMA said the proposed new law would allow third parties to have access to personal medical records without the consent of the patient. Third parties, as described in the draft bill, would extend from the Health Insurance Commission (HIC) and the private health funds to numerous others claiming the need for public interest research. In the words of the bill, access to peoples medical records would be legitimate without patient consent where obtaining consent was impractical a term which the bill left undefined and open-ended.
Privacy is the linchpin of the doctor-patient relationship, according to the medical profession. Patients put their trust in doctors when they tell them their most intimate details. The AMA thinks the risk to the doctor-patient and the challenge to traditional medical ethics from the proposed bill is enormous.
The Federal Attorney-General defended the bill by claiming that the proposed legislation would balance the public interest in research and statistical analysis with the need to protect privacy. University of Western Australias Professor Fiona Stanley, Director of the Institute for Child Health Research, agreed. Writing in Australian Medicine (3.4.00), she declared:
Public health research uses epidemiological methods on data collected on groups of people to measure the amount of disease and its risk factors in populations. Clinical and health services research uses similar methods to compare outcomes in groups who have received different types of care so that effectiveness can be evaluated. Such research is essential to obtain knowledge about preventing disease, or to treat it more effectively.
The AMA responded that obviously it supported clinical research but only so long as patients had specifically and contemporaneously given their consent, and the data was de-identified. Electronic health had enormous potential to improve the health of patients, the AMA said, but there were huge problems to resolve. But Professor Stanley called it scare mongering to claim that computers were making invasion of medical privacy problems worse. She claimed that the excellent guidelines developed by the National Health and Medical Research Council:
only allow this kind of research to be done by bona fide investigators whose projects are scrutinised rigorously both for their science and by ethics committees... Researchers are investigated and questioned about how data are kept ...
Information or Mis-information?
So far, the debate within the medical profession over electronic health has centred mainly around the issue of privacy. But a new book, The Endangered Medical Record Ensuring its Integrity in the Age of Informatics, (Tringa Press, 2000) raises another critical element accuracy and reliability of the information recorded.
This book is an American study but its central message is equally applicable to Australia. It is written by Vergil Slee, MD, Debora Slee JD, and H. Joachim Slee led the team which modified the International Classification of Diseases, for use by US hospitals. His daughter, Debora Slee specialises in health law and medical record terminology. Schmidt is an applications engineer, lawyer, and informatics specialist.
Much of the book is a technical analysis of medical information and statistical systems. But its basic message, crudely stated, is the old adage, garbage in, garbage out. The growth of vast, inter-linked computer data bases, monitoring, analysing and judging clinical practice according to evidence-based medicine seems inexorable. But how confident can we be in its products?
The book begins with the claim that:
clinicians have tended to view the official medical record with some suspicion. Coding has been warily regarded as primarily a financial, rather that clinical exercise. This suspicion has been given credence by the proliferation of vendors promising to help hospitals and physicians wring the maximum reimbursement out of each episode of illness ...
Yet as medicine has moved from a quill-and-pen sensibility ... to the era of the microchip, the importance of the properly coded medical record has grown exponentially. Coding is being transformed from a reimbursement mechanism and rudimentary clinical review tool to the basic byte of information needed to manage the healthcare system. Coding provides the lens through which we see everything from illness prevalence to quality improvement effectiveness to financial trends. Yet as this book disturbingly details, that lens is pockmarked with distortions.
The book goes on to explain how our health care systems are increasingly :
built on information from the medical record. That information, in turn, is constructed from a series of codes that are designed to condense a complicated clinical narrative into a simple and consistent set of numerical values.
Unfortunately these codes are neither as comprehensive nor as precise as they should be. Moreover, its not just that the same code can be interpreted differently by different physicians or members of the hospital records department. Worse, the same code in different years may actually be describing separate clinical conditions, thanks to coding updates and revisions.
The result can be an edifice built on sand. In the authors view, the potential exists within electronic medicine for progress, but also for counter-productive and even dangerous misinformation. The book provides telling illustrations of counter-productive, misleading and even manipulative applications of medical statistics. Its analysis of the category coding of AIDS is one example.
Up to 1985 the incidence of AIDS in America was officially stated at 3 to 4 per cent. But until 1985 there was no official definition in America of the AIDS disease. When officially defined for recording purposes in 1987, the reported incidence of AIDS immediately increased by 24 per cent. In 1992 the official definition was again changed. The reported incidence jumped by another 50 per cent. According to the authors:
These changes were due solely to changes in the definition, not to the incidence or prevalence of the disease. Whole groups of individuals went into, and out of being labelled as having AIDS.
All this provides powerful reasons for treading warily when it comes to reform of privacy law. Undoubtedly there is worthwhile potential in electronic medicine for improved research. But there is also potential for harmful intrusion, greedy and insensitive co modification, unintended, misleading dysfunction, and deliberate commercial or political manipulation.
Dominant neo-liberal ideology and international agency pressure for deregulation argue that expanding data bank collection and distribution is both inevitable and in the consumers interest. But is it, and at what social cost? Powerful players have an additional agendas. Governments are concerned with cost reduction and corporations with profits. Traditionally we have been prepared to entrust our intimate details to our doctor. Will we do so as readily in the future if governments, insurance and health corporations, and assorted entrepreneurs are given access to his computer?