Tuesday, August 01, 2017

An Important Contribution To The Discussion Around The Legitimacy Of And Ethics Around The myHR.

I came upon this paper this week:

Health Privacy and Confidentiality

Health Privacy and Confidentiality, Chapter 23, in Tensions and Traumas in Health Law, I Freckelton and & K Petersen (Eds) (2017) Sydney: Federation Press, Forthcoming
17 Pages Posted: 14 Apr 2017  

Danuta Mendelson

Deakin University, Geelong, Australia - Deakin Law School

Gabrielle Wolf

Deakin Law School
Date Written: February 15, 2017

Abstract

The notion that a patient has the right to maintain the confidentiality of information disclosed in the course of a therapeutic relationship with a health practitioner has been entrenched in Western civilisation for thousands of years. For the first time, however, we have begun to witness an erosion of this entitlement, especially in Australia in recent years. The Australian Federal Parliament has created a system of co-linked national electronic health records that, by virtue of new technology, permits government bodies and myriad other third parties to access and disseminate individuals’ health information both lawfully and without authority, almost invariably in the absence of patients’ knowledge and consent. Commonwealth legislation has also facilitated the substitution of patients’ traditional right to confidentiality of their health information with a much broader and less clearly defined right to “personal privacy”. This chapter examines how these changes have led to a fundamental upheaval of longstanding understandings about the protection of information communicated and learned in the once secluded space of the consulting room.
Keywords: patients, confidentiality, electronic health records, Big Data, assymetry of power,
JEL Classification: C55, C 89, I18, I19, K19, K39
Suggested Citation:
Mendelson, Danuta and Wolf, Gabrielle, Health Privacy and Confidentiality (February 15, 2017). Health Privacy and Confidentiality, Chapter 23, in Tensions and Traumas in Health Law, I Freckelton and & K Petersen (Eds) (2017) Sydney: Federation Press, Forthcoming.
The detailed and scholarly article provides a summary of the nature of patient confidentiality / privacy through time (back to the Greeks) and then provides many pages of discussion around the myHR.
The concluding remarks are as follows:

Conclusion

“Technological advances have made possible the development of a system of national electronic health records. While the digitization of health information does not inherently undermine the confidentiality of patients’ health information, the My Health Record system that the Commonwealth Parliament has legislated to create, and the technology used to operate it, has enormous potential to do so. The old adage, “knowledge is power”, can be
interpreted in several ways, including as a shorthand for saying that, the more the State knows about its citizens, the greater the power that it can exert over them for good and for bad. The My Health Record system exponentially expands the knowledge that Australian governments, but also other third parties, can acquire about individuals’ health information and, consequently, their authority over them. The creation of the My Health Record system has coincided with the substitution of the concept of patients’ right to the confidentiality of their health information with a much broader and less defined right to personal privacy. Both developments have significantly eroded our former capacity to secure information disclosed in the course of therapeutic relationships with our health practitioners.”
I find this all rather chilling to say the least. It is not an accident that Tim Kelsey is keen on working in Australia because of our laws which seem to have eroded many of our previous assumptions regarding the our control of our personal information – and not for the better I must say. The AusHealthIT poll of July 23 shows many agree with the position expressed in this paper in terms of the privacy risks etc.
David.

14 comments:

Anonymous said...

This highlights a clear and present danger, one where governments get caught in the headlights of surveillance technologies that they are not equiped to understand or control. It is becoming clear we do not have legislative controls in place to keep checks and balances in place to protect our nation. Self promoting organisations and inderviduals are taking us down a dangerous path under a banner of fear and doom, we are lied to as citizens and the gevernment is fooled.

Perhaps Tim is as fooled and irresponsible through a shallow understand of this and a strong belief in himself, but with a track record of happily flogging personal information to any open wallet willing to pay I for one no longer trust the ADHA.

Anonymous said...

AMA, RACGP, Pharmacy Guild and consumer forum, well done, you wil be forever remembered for what you have let out of the box.

Anonymous said...

Thanks for posting the article David, very informative and well researched by the authors who obviously understand the subject matter. Am I concerned? From a broader perspective around the erosion of my privacy in the name of security I am. From the Governments attempts to centralise healthcare under a federal banner, not so much, neither Tim Kelsey or Paul Madden have a demonstrated track record of being able to run a bath let alone something like this. It will of cause do harm to people, business, innovation and hold back health for a decade.

Peter said...

Surely that was the point of the "Personally Controlled" in the PCEHR concept.
Centralising records always leads to a bigger target and therefore tighter security controls. Keeping the information at the point of use and linking it a need for patient approval reduces the overall risk. The issue then becomes one about how to share (securely and with permission) when necessary rather than one of how to keep a massive store of valuable information safe.
[To short circuit a different conversation, the patient's right to approval does not imply, one way or the other, the patient's right to view the records themselves]

Anonymous said...

As a probable opt out ASAP member of society this fine article simply reinforces my desire to separate myself from Government HR, considering I embrace technology in every other aspect of my life this really highlights just how bad this My Health Record is.

From a jobs and growth perspective, the government seems to be trying to compete with far slicker and user centric private sector organisations, whose numbers are increasing, the government is competing at the cost of implementing enabling policies, adherence to standards and the development of existing and new standards. The private sector now out strips the ADHA when it comes to intellectual and financial support, these private developments are being trialled and rolled out across Australia. Where the ones I have trailed or interacted with, it is obvious these private sector offering have a far greater appreciation of user needs and clearly are able to deliver the sorts of functionality years ahead of government, if indeed government has the imagination or will to consider these functions. This then begs the question is the government through forcing adoption of the health record actually dumbing down healthcare and then at what cost? I also question the use of MY, it comes across very childish, what marketing group came up with that, even MyHR is bad, HR is wed to human resources, no wonder the public turn off.

Anonymous said...

10:24, is it even a health record or a health summary?

Anonymous said...

The subject of this price sounds like a great public discussion for the ADHA CEO to facilitate in a live open forum. It would demonstrate Leadership and at least a perception that they can address valid perspectives face to face. Who knows it might actually win some confidence. Tim what do you say?

Anonymous said...

August 02, 2017 10:49 PM. More chance of it snowing in Broome than that happening. Tim appears unable to engage unless its is scripted, delivered from behind a web browser or podium with some meaningless slides. The ADHA executives are content free and I do not believe there are many workers left who could grasp a broad discussion such as that posted, those that possibly could probably no longer have the will or freedom to do so.

That said, who needs the ADHA to front up, perhaps another organisation could facilitate, maybe get Alan Jones to host it.

Dr Ian Colclough said...

August 03, 2017 8:12 AM - The ADHA has a well informed audience of 300 or thereabouts to talk to about eHealth. We've heard Tim say that the ADHA “inherited a system that was clunky and not that useful.” That’s true.

Let’s hope he expands on that thought a lot more at HIC; like specifically enumerating in what way does he perceive the “system is clunky”? What does he mean by “not that useful” – specifically what does the system not do and what specifically should the system do that will make it useful and in what way will that make it useful – exactly how; and what exactly will be the benefits to the doctor, to the patient, to the carer, to the carer-recipient, to the government, to the nation?.

As Tim quite rightly has observed of GPs “We are talking about scientists who base their decisions on evidence.” … and …. “When a clinical professional has reservations about digital healthcare, it’s not because they’re against digital, it’s because the benefits of digital are not evident to them.”

Hopefully at HIC he will be more specific about - what are the benefits he wants the doctor, the patient and carers to embrace and enjoy, and how will he make those benefits evident to us, particularly the doctors, for if the doctors don’t / won’t use the system then it will be of no benefit to anyone at all. Here, he might find it helpful to call on his clinical support team of Doctors Pinskier, Makeham and Hambleton to specifically flesh out the specifics; clearly and unambiguously.

In complex projects of this kind asking the hard questions and drilling down to find answers that stand up to intense scrutiny is often not welcomed; so be it – even so, they must be asked, repeatedly, for that alone will get to the heart of the project’s raison d’etre.

Some really positive reporting in the media post HIC, be it PulseIT, The Medical Republic, Australian Doctor, Medical Observer, and even David’s widely read blog, would go a long way to reassuring the foregoing stakeholders that all is well and on track to success.

Anonymous said...

Ian the article does not question the validity of the systems usefulness but more the cost, that being the cost in erosion of our civil rights. Probably not something I would discuss with a GP.

Anonymous said...

"Bureaucracy is the enemy of innovation."
Mark Shepherd, former President and CEO of Texas Instruments

Anonymous said...

And?

Anonymous said...

@11.15 AM, Thanks for the great comment, valid observations. I'm looking forward to being enlightened at the HIC by the ADHA. It will go a long way to boosting my confidence in the MyHR.

Anonymous said...

11:15. The bold statements made by Tim that you point out, like the bonfire of faxes, are phrases of other people's, cherry picked over time and rehashed like retro fashion or some jacket from a bygone era found in the back of an charity shop, when worn the wearer may fell cool, but to many it is ill fitting and somewhat crass. For me all that this presents, is a lack of sincerity in messaging and understanding of the domain one pretends to be reshaping for the better. Perhaps even an unwillingness to understand in fear it may divert from the ultimate goal of harvesting information for profit and a belief in governments right to control all things.

To the point of doctors are scientists, that is a stretch and probably does a discredit to both noble professions, but in defence it again is some catchy feel good phrase cherry picked so that the context of its origin is lost. Yes some doctors may be scientists, but not all, I had a science teacher, does that make all teachers scientists?

The training of doctors is appropriate to their mission: to help suffering patients by applying the best available contemporary understanding. The training of scientists is also appropriate to their mission, but it’s a different mission: to advance understanding beyond the contemporary state, which means to discover things that reveal gaps or mistakes in contemporary understanding. That difference becomes of considerable practical significance when research in medical science is carried on by people trained as doctors.