Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Tuesday, December 05, 2017

Digital Rights And Privacy Are Important To Many Of Us. Here Is Some Current Evidence.

This appeared a few days ago:

It's not too late to fight for our digital rights. Here's how we start

By Ariadne Vromen, Kimberlee Weatherall, Fiona Martin and Gerard Goggin
27 November 2017
Uber's admission that it covered up a major data hack affecting 57 million users is the latest example of a mass infringement of digital rights.
As our worlds move ever more online, to the benefit of major technology firms such as Uber, Facebook, and Google, the need for a frank and open discussion about our digital rights has become urgent.
Government, as a central home to so much of our personal data, must be part of this mix.

Why it matters

Voicing concerns about technology is not new.
As David Brooks noted in the New York Times, "the left is attacking tech companies because they are mammoth corporations; the right is attacking them because they are culturally progressive."
If we leave politicised critiques to one side and look at why the public is concerned about their data, we see their worries are often well-founded.
Take this account of a former Facebook Operations Manager tasked with addressing its privacy issues, who speaks of an organisation that "prioritised data collection from its users over protecting them from abuse".
Australians are some of the world's greatest users of social media and mobile broadband, and our nation is in the top ten globally for internet use.
We adapt early to new technologies and our high uptake of smartphones paired with our relative level of wealth means we meet the digital archetype.
At a time when our use of technologies is redefining aspects of our personal and professional lives, researchers are compelled to explore our rights now and into the future.
This means taking a deep look at the role of private, transnational digital platforms in reshaping the way we work, study and conduct business and our interactions with government and each other.

What we've learnt

This week, our digital rights and governance project at the University of Sydney released a major report, detailing the attitudes and opinions of 1600 Australians on key rights issues.
We conducted our survey through Essential Media and held an online focus group discussion about scenarios (much like that of the Uber data breach), as well as analysing legal, policy and governance issues.
What we have learnt is that Australians have real concerns about digital privacy and how it is impacted by profiling and data analytics.
Australians' opposition or support for government surveillance depends on a complex set of scenarios around justice and anti-terror.
In the workplace, Australians think digital privacy matters just as much.
Most of us don't want our employers looking at our private social media posts, but concern for such practices breaks down through levels of education.
High-school educated, blue collar Australians and those over 40 are most concerned about employers accessing their social media posts.
This raises questions about how complacent or even complicit some companies may be about the monitoring of social media activity.
It also suggests that existing employment law may not adequately protect employee rights to digital privacy.
And we also grapple with wider realities of the digital disruption that gallops apace through our myriad interactions.
Real-world inequalities are being writ large on the digital plain, with our online experiences filtered by our age, gender, and social background.
More here:
There is also some coverage here:

Most Australians concerned about digital privacy: study

A majority of Australians surveyed about digital rights, the need for governance and the responsibilities of social media platforms have indicated that they are concerned about their digital privacy.
The survey, carried out by the Digital Rights and Governance Project at the University of Sydney, found that of 1600 survey subjects 67% were taking steps to protect their privacy online. But only 38% felt they were in control.
The study found that about 80% wanted to know what information of theirs was being accessed, by whom, and how to report and correct inaccuracies.
“Australians’ personal and professional lives are being transformed by digital disruption, while lawmakers, technology elites and corporate boards fail to keep up," said the report’s co-author, Professor Gerard Goggin.

"Data hoarding and seemingly opaque decision-making has given rise to community concern and an urgent need for our digital rights to be clearly laid out by the government.”
Another co-author, Professor Ariadne Vromen, said: “Our results provide a snapshot of the nation’s attitudes and behaviours in the digital world and show Australians’ clear concerns about how their information is being used and accessed by governments, social media platforms and corporations."
The report also shows support for state-led surveillance of internet activity is dependent on what it is for. Some 57% favour collecting communications data for anti-terrorism purposes. However, the same percentage oppose a broader requirement for Internet service providers to store customer metadata.
More here:
This link provides more info.
It seems concern about privacy and associated issues has not died out – despite many saying it has!
The implications for Digital Health need to be carefully considered.
David.

Addition 5:30pm

"Conclusion
The Legislative Instrument is compatible with human rights because it advances the right to health.  Any limitation of the right to privacy is proportionate, necessary and reasonable to achieving improved healthcare for Australians.  Increased use of the My Health Record system, which will occur as a result of opt-out arrangements, will result in a number of privacy positives compared to use of paper-based records."
This is from the Explanatory Memorandum published a day or so ago. 
To me the evidence-free assertions and unsupported judgment claims being made by Government / The ADHA here are just gob-smacking!
What do you think?
D.

9 comments:

Anonymous said...

found that individuals felt the benefits far outweighed risks to privacy, confidentiality and security????

So research based evidence is clearly out of sync with the ADHA CEO, it does leave me questioning if any research and evidence or much else for that matter that come forth from the ADHA can be believed. A shame really it held such promise

Bernard Robertson-Dunn said...

"found that individuals felt the benefits far outweighed risks to privacy, confidentiality and security" is a true statement if more than one individual expressed that view.

What is not stated is how many individuals had that view and how many had a different, possibly opposing view.

It is significant to me that the government is resorting to vague claims of benefits, dubious evidence and unjustified actions.

If they were able to provide solid evidence and could explain in a cause/effect manner how the benefits will accrue then that would form the basis of trust and comfort that what they are trying to do has value.

But they haven't.

Anonymous said...

No they have not Bernard. Instead the act like spoiled little brats and tell tales on anyone who might think slightly less dimly. That aside I really question if ADHA is a mature enough organisation to be operating anything as serious as national infrastructure. Power point and empty speeches won’t fool the reality of information technology as it tries to wed itself with complication health workflows and knowledge

Anonymous said...

We can but wait for the event to happen. I have met a number of nice people at ADHA, many in the wrong roles and none supported by the caliber of skill sets required to pull this off.

Anonymous said...

you mean like a historian/journalist with no experience in health care or health policy or senior management in any sort of organisation or IT running a public sector organisation?

Strange. Almost as though he's been set up.

Bernard Robertson-Dunn said...

Talking about the ivory towered bureaucratic classes......

ICYMI, Dr Enrico Coiera tweeted a link to this paper:

Systematic biases in group decision-making: implications for patient safety
October 2014
https://academic.oup.com/intqhc/article/26/6/606/2886593

"Abstract
Key decisions in modern health care systems are often made by groups of people rather than lone individuals. However, group decision-making can be imperfect and result in organizational and clinical errors which may harm patients—a fact highlighted graphically in recent (and historical) health scandals and inquiries such as the recent report by Sir Robert Francis into the serious failures in patient care and safety at Mid Staffordshire Hospitals NHS Trust in the English NHS. In this article, we draw on theories from organization studies and decision science to explore the ways in which patient safety may be undermined or threatened in health care contexts as a result of four systematic biases arising from group decision-making: ‘groupthink’, ‘social loafing’, ‘group polarization’ and ‘escalation of commitment’. For each group bias, we describe its antecedents, illustrate how it can impair group decisions with regard to patient safety, outline a range of possible remedial organizational strategies that can be used to attenuate the potential for adverse consequences and look forward at the emerging research agenda in this important but hitherto neglected area of patient safety research."

Dr Coiera posited that the 4th bias "Escalation of commitment' might help explain the trajectory of several international large scale informatics ventures of the last decade.

I retweeted with

"'Escalation of commitment' applies to at least one on-going project failure in Australia. And it's from 2014.

A sign of disdain for experts.

Known as hubris."

I then realised I ought to clarify what 2014 referred to:

"It's the paper that's from 2014 not the project. The project's been going on a lot longer. A lot, lot longer."

Anonymous said...

We also need evidence which actually persuades politicians to change. Too much evidence-based policy is actually policy-determined. Evidence needs not only to be valid, but it needs to be such that when people see it they know what to do without secondary explanation or secondary argument. Hard-baking advocacy into evidence.
Stop the never never land. One of the big differences between complexity and systems thinking: In systems thinking, you define the ideal future state and you try to close the gap. In complexity, you describe the present and see what you can change. You define a direction of travel, not a goal.
If you start on a journey, you will discover things you didn’t know you could discover which have high utility. If you have an explicit goal, you may miss the very things you need to discover.
As one who is saddened by the last few years in our national entity. I see the issue for ADHA and Government in general as being the last chance saloon for Sick Stygma business process re-engineering with the worst aspects of cultism added on for good measure. It’s a cult and it has high priests that get different coloured belts to indicate their cult status. If they are given a black belt, they no longer have to do any real work because their job is to impose cult discipline on those people who do.
They see something work in one context and assume it will work in another
By being constrained by the MyHR the Government is now unable to Manage the present to create a new direction of travel which is more important than creating false expectations about how things could be in the future

Bernard Robertson-Dunn said...

Why is My Health Record still a thing when this sort of system has been rolled out and is operational, costs the Federal Government nothing, is less privacy invasive, is more secure and isn't patient controlled (meaning patients can't distort the data)?

GP access to ‘The Viewer’
https://www.goldcoast.health.qld.gov.au/health-professionals/gps/gp-the-viewer

Queensland General Practitioners (GPs) have online access to patient information through Queensland Health’s read-only application, The Viewer.

Providing GPs with access to The Viewer (GPTV) is a key initiative of the Specialist Outpatient Strategy: Improving the patient journey by 2020 which aims to improve the patient journey.
What is The Viewer?

The Viewer (QH staff only) provides consolidated clinical information about each patient who receives treatment or care at a Queensland Health facility.

The Viewer is a web-based application that displays key patient information from a number of Queensland Health clinical and administrative systems, such as pathology results, radiology results, medications, allergies and alerts, care plans, as well as discharge summaries.
Benefits

Providing GPs in Queensland with access to their patient’s clinical information via The Viewer will:

* provide real-time and accurate access to medical information

* reduce duplication of diagnostic testing

* help ensure more consistent, timely and coordinated care.

Bernard Robertson-Dunn said...

Came across this today:

"A person with one watch knows what time it is; a person with two watches is never sure. Proverb"

Applying this principle to medical records:

One eMR (i.e.your GP's) is OK (not perfect, but OK)
Two eMRs (i.e.your GP's + MyHR) is unsafe.

Remember - MyHR is a only a copy of other data. (We know this because Tim told us so) and the copy may not be up-to-date.

And when a patient goes to A&E or another doctor, their version of their medical condition is a third. Uncertainty piled on uncertainty.

There's far more to a patient's medical condition than the data in EMRs.