The private sector is to come under the Privacy Act this month. The commercial elements have been much discussed – things like credit provision and junk-mail lists. Another more important debate is about the use of health data. For the first time, private health providers are to come under the provisions of the Commonwealth Privacy Act.
What is likely to happen? Well, the Act may provide an inkling because private health providers have been subject to an ACT law on privacy which has similar principle to the federal Act since 1998 under the Act Health Records (Privacy and Access) Act.
The critical national privacy principles when it comes to health records are that information should not be passed on without consent; that it should only be stored or used for the purpose for which it was gathered; and that people should have access to their health records.
Health Complaints Commissioner Ken Patterson says the Act is based on a simple idea.
“”Health information collected during the treatment of patients should be available to members of treating teams, so that they can treat people safely and effectively,” he says. “”Health records should also be accessible to the patients receiving treatment. Health information should not, as a rule, be available to anyone else.”
It seems innocuous enough, but there is potential for great controversy here. Health records are a huge testing ground for privacy issues because of their very nature. They are intensely personal. They matter far more than if credit is refused, or someone gets some unsolicited junk mail. But they are written to be shared. Very few medical conditions are treated by a single person. Doctors write scripts for pharmacists and reports for specialists. Pathologists and radiologists and hospitals join the treatment. So there is room for leakage.
Moreover, health reports are often technical and brief so subject to misinterpretation. But family members often need to have some information in order to help look after an ill person. Health records are also helpful in dealing with public health.
The great irony of privacy laws is that doctors, professionals, the public sector and other commercial holders of information do not want to divulge information because it is against their commercial interests and might uncover malfeasance. They will happily cite privacy, or commercial-in-confidence or any other reason that comes to hand to prevent disclosure.
It is one of the problems of the new privacy laws that they might become a handy (if unjustified) excuse for non-disclosure. But it is also their great strength because they give a right to access, and if necessary correct, personal information. Indeed, without the right to access and correct, privacy laws are worthless.
The ACT experience with a privacy law that applies to private-sector health provision has highlighted the resistance to disclosure.
Patterson says that over the past four years, “”many complaints were about failures by health professionals to pass on information to the current treating team. Problems most often arose when practices were closed or when doctors moved to new practices and their patients followed them.”
So doctors who are quick to cite the confidentiality of the doctor-patient relationship and patients’ interests in their fights against Medicare and efficiency drives against the ever burgeoning pharmaceutical benefits scheme, use the same arguments to keep patient records in an attempt to hold on to clients or resist disclosure that might reveal negligence.
It is true in the public sector. Ninety percent of Freedom of Information requests are people seeking what information the bureaucracy holds on them and whether it is correct.
The other issue of contention is access to health records for medical research.
General privacy principles suggest that personal information should be used only for the purpose for which it was collected and no other purpose unless consent is sought. It sounds reasonable enough. But, as epidemiologist Professor Bob Gregory points out, it has its drawbacks.
Epidemiology is the study of diseases in populations. It looks at correlations and causations. High-fat diets, bad teeth, wealth inequality, radiation, fluoride, mosquitoes and so on are markers for disease and knowledge of them can help development treatments for the benefit of all. Other medical studies look at the effect of drugs on treatment success. These studies benefit immensely from studying all people who suffer from the disease.
These scientists want quick and cheap access to all records. The identifying elements can be stripped off. Armed with the knowledge of all environmental elements, treatments and disease progress they can improve treatments and devise new ones. They can determine the effectiveness of immunisation campaigns and other preventative measures. The studies get warped if some records are left out. There might, for example, be a critical correlation between the sort of people who are worried about disclosure of details and the progress of disease.
The studies become too costly or impracticable if individual permission has to be sought for the raw data without identifiers to be included in studies.
Given the huge amount of public money that goes into treatment – even of people on full private cover – there is a solid argument that those being treated have a public duty to allow the raw data to be used in research that will benefit all.
These issues will be fought out as the new privacy laws come into effect.
There are already exemptions for disclosure of illness that have an immediate effect on public health – typhoid, ebola and other deadlies must be notified.
But what of the long-term benefits of health research.
In the meantime, there will need to be some working out of how the new Commonwealth law will impact on the ACT’s special health law. The Commonwealth law is general and encourages industry-wide codes, but health provision has a huge number of small-providers and health records have special characteristics requiring special consideration.