I was alerted to this by Karen Dearne within moments of it appearing!
'My [Electronic] Health Record' – Cui Bono (for Whose Benefit)?
Danuta Mendelson
Deakin University, Geelong, Australia - Deakin Law School
Gabrielle Wolf
Deakin University, Geelong, Australia - Deakin Law School
December 7, 2016
(2016) 24 Journal of Law and Medicine
December 7, 2016
(2016) 24 Journal of Law and Medicine
Abstract:
We examine the operation of Australia’s national electronic health records system, known as the “My Health Record system”. Pursuant to the My Health Records Act 2012 (Cth), every 38 seconds new information about Australians is uploaded onto the My Health Record system servers. This information includes diagnostic tests, general practitioners’ clinical notes, referrals to specialists and letters from specialists. Our examination demonstrates that the intentions of successive Australian Governments in enabling the collection of clinical data through the national electronic health records system, go well beyond statutorily articulated reasons (overcoming “the fragmentation of health information”; improving “the availability and quality of health information”; reducing “the occurrence of adverse medical events and the duplication of treatment”; and improving “the coordination and quality of healthcare provided to healthcare recipients by different healthcare providers”). Not only has the system failed to fulfil its statutory objectives, but it permits the wide dissemination of information that historically has been confined to the therapeutic relationship between patient and health practitioner. After considering several other purposes for which the system is apparently designed, and who stands to benefit from it, we conclude that the government risks losing the trust of Australians in its electronic health care policies unless it reveals all of its objectives and obtains patients’ consent to the use and disclosure of their information.
Number of Pages in PDF File: 14
Keywords: electronic health records system, privacy, Big Data, surveillance, control
JEL Classification: L18, K19, K39
Here is the link:
The conclusion says it all!
CONCLUSION
The My Health Record system and the legislation that establishes and supports it have fundamentally changed understandings of the functions of clinical records. No longer created and used simply to provide health care to patients, health practitioners’ records of their treatment of patients have become property for use by government and commercial entities for a variety of purposes well beyond serving patients’ therapeutic needs. Patients’ lack of control over their electronic records and derivation of minimal, if any, benefit from the My Health Record system will ultimately engender distrust in the system. To have any hope of restoring the community’s faith in electronic health records, the Australian Government will need to ensure that the My Health Record system genuinely serves patients’ interests, be completely transparent about all of the objectives of the system, and obtain patients’ agreement to the collection, use and disclosure of their health information for purposes that may not benefit them personally. In other words, the government operating the My Health Record system needs to be mindful of Immanuel Kant’s second categorical imperative to “act in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end, but always at the same time as an end”.124
Really worth a close read. I am assured the authors are genuine experts in the areas of big data etc.
The bottom line is that these authors believe that this initiative is a wrong headed, intrusive and unjustified policy intervention
The bottom line is that these authors believe that this initiative is a wrong headed, intrusive and unjustified policy intervention
Enjoy.
David.
7 comments:
Over to you Tim zkelsey, are you all about patient dignity and the rights of civil society? Or are you just out for glory using poor patients as a tool for your own selfish aims?
To be fair, he has been given an ugly, disabled pig. No amount of lipstick will fix it - and the government wants to keep the pig.
Surely it is Tim's job to explain to them why that is a very bad and very expensive idea?
But I guess I am in a Christmas haze!
David.
Do you suppose the government wants to hear that? They've never listened before, why start now. The ADHA does what Ley tells it. Tim should have worked that one out by now.
2:27 PM The ADHA does what Ley tells it.
Wrong.
The ADHA does what the bureaucrats want it to do. Senior bureaucrats are on the ADHA Board. The Minister does what the bureaucrats advise her to do. The Minister does not have the depth of knowledge or expertise to do otherwise - she is dependent on the advice provided by her Department. Senior bureaucrats in the Department control the Agenda; always have, always will. The less knowledge they have the more influence they exert to prove to themselves they know what they are doing.
Well the ADHA is what it was intended to be - Another Department of Health Adjunct.
Concerning paper indeed, what will the consumer health forum do? What will various privacy groups do? Very little is my guess, faced with reality they will scamper into the shadows and get flogged off with some sort of research grant and write a paper on how wonderful this all is.
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