By Merle Spriggs
Electronic health records raise difficult issues of who sees what, and when.
Would you want your dentist to know you have haemorrhoids or your optometrist to be aware of your HIV status? Questions such as this are at the heart of any discussion of electronic health records, something that could affect all of us very soon.
The federal government has allocated $467 million over two years to introduce a personally controlled electronic health record system, so it is essential that we assess the potential harms and benefits of such a system.
It's a complex issue, highlighted this week in reports from a coroner's inquest that crucial details about a patient were missing from a hospital's electronic records because they were updated only every 13 weeks. The missing information could have helped in the assessment of the patient before he committed suicide - the implication being that they could have helped save his life.
While it is the coroner's job to make determinations in this case, it is important for everyone to be aware of the legislation passed by the Senate in June to allow the National E-Health Authority and Medicare Australia to begin assigning individual healthcare identifiers to the Australian public.
Initially, the proposed electronic records will hold summaries of patients' health information, including current medications and adverse drug reactions. Patients will be able to control how data is accessed or shared, and by whom - so your dentist, optometrist or chiropractor can't see things you'd prefer they didn't. But the role that consumers will have in controlling access to the information raises the possibility of unintended consequences.
Potentially, there are enormous benefits in having such a system and in having our own personally controlled record. Electronic records could improve outcomes for patients by improving safety and quality in healthcare. It is believed that that they will fix the problems of paper records, which are notorious for being difficult to read, incomplete, sometimes unavailable, and not all in the one place.
It is anticipated that sharing records among different health providers will result in a reduction in medical errors, less duplication of tests for patients, better care in emergency treatment situations, smoother handovers between clinical teams and, not least, patients who are better informed and more involved in the management of their own healthcare.
Health policy should improve because the information in the records can be used in research and planning.
Crucially, this depends on complete and accurate information, which suggests that two central and essential aspects of the system - the quality of the information in the record and the privacy protection features - may not sit well together.
Allowing patients to control access to information has provoked fears that it will leave doctors and other healthcare providers without a complete health record, putting patients at risk of harm.
Of course, patients sometimes have concerns that compete with or outweigh wanting the healthcare providers they consult to have access to all of their information just in case it might be relevant.
Recent surveys, such as the 2010 CSC Healthcare Research Report, show that while Australians strongly support the idea of electronic health records, they also place great importance on privacy.
Seventy-eight per cent of people aged 65 and over think it is important to be able to control the information different healthcare providers can view. Among those aged 18-64, it was 87 per cent.
The disclosure of sensitive personal information can lead to prejudice, discrimination, social stigma, embarrassment and a loss of the respect of others. Exposing our frailties and vulnerabilities can cause us emotional distress and lessen our self-esteem.
Crucially, a loss of trust in the health system could lead to patients not seeking treatment. This is of particular concern with adolescent health, as research has shown that some teenagers would not seek healthcare if they thought their parents might find out, especially in matters of sexual health.
The introduction of personally controlled electronic health records will mean that, as consumers of health, we have much greater responsibility in maintaining our health information. We will need to understand the implications of withholding information and realise that decisions may be made on the basis of incomplete information.
There are other questions to consider as well: when is a record updated and who updates it? How long will it take for new information, such as a new diagnosis, to be recorded? Will your doctor take notice of what you put into or correct in your record?
The area of mental health is particularly fraught. The stigma means that people with mental illnesses may have especially good reasons to want to control access to their health information. The case before the coroner shows what can be at stake.
Dr Merle Spriggs is an ethicist with the Murdoch Children's Research Institute and is currently working at the University of Melbourne on a project exploring the ethical issues of personally controlled electronic health records. merle.spriggs@mcri.edu.au