The concept of a digital record to improve the delivery of health care to both individuals and the population sounds great. However the implementation of this concept to date has raised many more questions than answers, said Dr Tim Woodruff, president, Doctors Reform Society. Those who may be at most risk of having their data misused are often the least likely to understand the possible negative consequences or how to avoid them. It’s time for the Federal Government to opt out of forcing people to opt in by default.
Until now people were asked if they wished to have such a record. This has changed and individuals are required to opt out by October 15th on a website with information which even I find hard to understand. If individuals don’t opt out then their private medical information will be digitised for any health provider to see. This is not informed consent.
There already appear to be examples of people finding that their children have been opted in without the parent’s awareness that they may sometime or other have signed something saying they agree. This is not informed consent.
Access to these records by government agencies with no interest in health eg courts, police, will be permitted without the need for a warrant issued by an independent judicial officer as is currently required. This would appear to be an unreasonable breach of privacy.
The risk of illegal access to data by hackers for private commercial uses is unknown but examples exist of successful hacking happening in resource rich countries like Singapore. This is deeply concerning. Do we need this much concentration of information?
The Federal Government has a framework to guide the secondary use of My Health Record system data. It is only now starting to implement that framework. It is a guide. We don’t know yet what the rules will be. Yet the data will be gathered almost automatically after October 15, 2018. The rules for use have not yet been determined. This is back to front. Rules should be determined first so people can see them, then people can make decisions about their data. Once again, this is not about informed consent.
Benefits of this concept exist. It may save some lives but we don’t know how many. It has the potential to make my work and the work of many doctors easier as we wouldn’t need to chase results on the telephone. This is hardly a reason to compromise privacy.
It may be helpful to the research community but we’ve had Medicare data for years and a general reluctance on the part of the Federal Government to allow much use of that data for research purposes. The research might show how bad the policy settings of governments are.
Dr Tim Woodruff Dr Con Costa President Vice President
Doctors Reform Society
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