The magazine of the Melbourne PC User Group Electronic Health Records - Your Health Online Monika Merkes

Recent media reports about employers and insurance companies requesting individuals' medical records, and a leaked government document about a proposal to sell Medicare information to interested organisations have alerted the public to some of the potential pitfalls of having confidential information stored in large databases.

Perhaps surprisingly, such databases have traditionally been opposed not only by consumer and privacy groups, but also by medical bodies such as the Australian Medical Association. The concerns are many and varied but in particular they have focussed on the privacy of health information that can be traced back to an individual, the reliability and quality of the health data, and the degree to which consumers and doctors have a say in who uses the information and how it is used. Leaked information from a single doctor's surgery may hurt a small number of people, leaked information from a national database will severely damage many people's relationship with the health system. There are also concerns that such a system may be used to check doctors' prescribing habits or consumer entitlements like medications at concession rates. If smart cards are part of an electronic health records system, Australians may perceive this as yet another attempt at the Australia Card.

In contrast, proponents of electronically stored health records counter that they can contain costs, achieve continuity in medical care and consistency of medical records, and provide useful data for public health research. They can reduce duplication of diagnostic testing, imaging and history taking and increase the adoption of screening programs and preventive health measures. An integrated electronic health record could be used as a personalised medical alert system, warning providers about allergies, possible drug interactions or pre-existing conditions that may influence treatment choices.

These arguments have won the support of the Australian Health Ministers, who recently announced that Australia will soon join the growing number of countries - including Canada, the UK and New Zealand - which have already started to introduce electronic health records at a national level. This new national database of patients' medical histories is to be called HealthConnect and will gradually be introduced over the next decade.

HealthConnect will collect health-related information about an individual in a standard, electronic format at the point of care. With the individual's consent, summaries of the health care provider's notes will be stored and can be retrieved and exchanged via a secure network between those health care providers authorised by the consumer to access this information. This shared information, the Federal Government claims, will put providers involved in the care of an individual in a better position to make decisions in partnership. The Government assures us that participation in HealthConnect will be voluntary and those who participate will have full control over their personal health information. The Government also assures us that participation in HealthConnect will be voluntary and that the information kept about us will be protected by rigorous privacy and security measures (http://www.health.gov.au/healthonline/connect.htm).

Can we trust this promise though? Once this large database is established, how can the individual be sure that his or her information is accessed only by authorised persons? Whose property is the stored information? How easy will it be for individuals to amend their health information once it is on the system? For example, someone may wish to delete information about a previous mental health problem because it is not relevant to their current health status, but may prejudice the way that others with access to the database deal with them.

Clearly the whole issue raises complex and legitimate privacy concerns. To this end Australian governments are developing new privacy legislation, with The Privacy Amendment (Private Sector) Bill 2000 having been introduced into Federal Parliament by the Attorney-General in April this year. Whilst this Bill deals with the fair handling of personal information in the private sector, it does not extend to the public sector, such as government departments (http://law.gov.au/privacy/InformationPaper.pdf.

The Victorian Government has released its draft Health Records Bill which will apply to health service providers and non-health agencies such as health insurance companies, employers, schools and sporting clubs. Health information in this context covers traditional medical records including records about physical, mental and psychological health, as well as information about a disability, information about donation of body parts, and genetic information which is in a form that is, or could be, predictive of the individual's health (http://www.dhs.vic.gov.au/ahs/healthrecords/index.htm).

This Bill will also give Victorians access to their medical records both in the private and public sector. The Health Records Bill complements the Information Privacy Bill 2000 which was recently introduced into the Victorian Parliament. The Information Privacy Bill applies to all personal information, except health information, that is collected or held by the Victorian public sector and organisations that are funded by the public sector (http://www.dms.dpc.vic.gov.au/).

It seems that information technology and telecommunications are not only causing a revolution in communication and commerce, but will perhaps inevitably bring about major changes in the way health information is accessed and health care services are delivered. Whilst the arguments for the introduction of a system such as HealthConnect are compelling, it would not be wise to overlook its attendant problems. Initially, participation in HealthConnect will be voluntary, but this may change in the future. So it seems especially important that we as individual health service consumers - and not just Government and health service providers - inform ourselves about the issues and processes and ensure that our interests are considered and respected.

About the Author:
Monika Merkes, monika@melbpc.org.au has worked in the health and human services sector over the last ten years, and recently "retired" temporarily to work on her doctoral thesis in public health. 

Reprinted from the September 2000 issue of PC Update, the magazine of Melbourne PC User Group, Australia

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