Brave New World of e-health a minefield
WHO owns medical information? Patients, doctors or institutions?
For some time now information technology has been heralded as a potential driver of reform, promising to improve much of the inefficiency and ineffectiveness that besets modern health care.
Indeed, it has generally been acknowledged that PCEHRs (personally controlled electronic health records) will allow timely and extensive information sharing among health care providers.
In the national sphere, federal Health Minister Nicola Roxon has long recognised the potential of e-health records, claiming that they will allow for a “seamless interconnection” and will save health professionals and patients substantial amounts of time. “Implemented properly, electronic health records will reduce inefficiencies between different parts of the health system and lower the potential for mistakes: inadvertent misdiagnosis or treatment”, the Minister is reported as saying.
To this end, hundreds of million dollars have been invested in the National E-Health Transition Authority (NEHTA) to make the idea workable. But like most things pursued by a consultative process, it has fallen victim to accommodating the pressures of powerful vested interests and the framework for the e-health record is in danger of becoming a dog’s breakfast.
The High Court ruled 15 years ago on doctors’ ownership of medical records, which was followed by changes to privacy law, giving patients the obvious and accepted right to access their own health records. But with dual ownership, PCEHRs raise new issues, such as censorship of content and restriction of access to information. In short, consumers would ultimately control what information is stored in their record and who can view the file.
In this event, the utility of such a file to doctors would be compromised and would become largely irrelevant to their practice.
This quandary raises the fundamental question: who owns the medical information? The one who provides care? The one who pays for the care? The institution, where the care is delivered? All of the above? None of the above? Some of the above? Confusion reigns supreme.
Even more crucial, is the question: who is ultimately responsible for the veracity, accuracy and currency of information?
Along with the expansion of electronic health information, there has been a potential commercialisation of patient databases. This begs the question: can patients now selectively authorise commercial access to their e-health records?
Imagine the nightmarish scenario this could unleash, especially if personal DNA information were to be added to patients’ files.
There is no doubt that the question of ownership of medical information will be acutely focused by the proposed PCEHRs, and the issue is bound to become a legal and ethical minefield.
To date, privacy laws and longstanding codes of professional ethics have prevented doctors from conveying medical information without the patient’s permission. And patients who want a paper or electronic copy of their medical records have always received them at a cost.
However, far from expediting an efficient health care system, PCEHRs may well stress established protocols and throw standards into turmoil. Like many other advances in the past, this one will inevitably throw up new questions, which must be addressed.
Before we plunge into the brave new world of PCEHRs, there must be unambiguous, clearly defined rules of ownership and responsibility for the accuracy and quality of content.
Should this not eventuate, doctors will refuse to “opt in” to a flawed and compromised system.
Dr Martin Van Der Weyden is emeritus editor of the MJA.
Posted 27 June 2011