Sunday, October 18, 2015

I Never Thought I Would See Phillip Ruddock Getting Involved In E-Health. His Cross Party Committee Has Thrown A Spanner In The Works!

It was one of those ‘choke on the Wheaties’ moments when I spotted this report.

'Significant privacy concerns' over myHealth Record system

Date October 15, 2015 - 6:49PM

Harriet Alexander

Health Reporter

New laws to give doctors and pharmacists instant access to medical records may pose a risk to human rights by violating privacy.
A parliamentary joint committee on human rights has called on Health Minister Sussan Ley to explain what safeguards are in place to protect Australians' privacy when their health records are uploaded onto a central electronic database, under the new myHealth Record system.
Currently, Australians' health records are only included on the database if they choose to register.
Longstanding Liberal MP Philip Ruddock, who chairs the committee, told Parliament the e-health bill raised "significant privacy concerns".
It was questionable whether the bill's objective - to drive increased use of the database by health professionals - justified the potential privacy breach, Mr Ruddock said.
"To be capable of justifying a proposed limitation of human rights, a legitimate objective must address a pressing or substantial concern and not simply an outcome regarded as desirable or convenient."
The e-health bill is the federal government's attempt to revamp the troubled electronic record system introduced by Labor, which spent $1 billion on the scheme but only one in 10 people registered.
In a bid to increase participation, the health records of all Australians will automatically be uploaded onto the database, unless they actively choose to opt out.
Proponents of the database say that it will lead to better co-ordination between health professionals, reduce unnecessary hospitalisations due to prescription errors and medication misadventures, and cut down on the duplication of tests.
More here:
There is also as very clear report here:

Human rights warning over PCEHR 'opt out' plan

| 15 October, 2015
Automatically signing patients up to the personally controlled e-health records scheme risks breaching international human rights law, a top parliamentary committee is warning.
In an attempt to breathe life into the PCEHR system, the Federal Government is pushing through legislation to make it “opt-out” only, where patients must declare they do not want their medical records automatically uploaded onto the system.
This is a shift from the current process where patients 'opt-in' to the scheme.
But the Parliamentary Joint Committee on Human Rights has warned that this approach could fall foul of international law.
Article 17 of the International Covenant on Civil and Political Rights states there is a right to control the dissemination of information about one's private life.
The committee, chaired by former attorney general Philip Ruddock, has stressed that the government’s proposed opt-out legislation accepts it will restrict privacy rights.
But the government is arguing these restrictions are justified because the objective of the system is to allow “healthcare providers” to access the information they need to inform effective treatment decisions.
However, Mr Ruddock’s committee has challenged this argument.
"[It] is questionable whether the objective behind the bill, in amending the system to an opt-out model, would be considered a legitimate objective for the purposes of international human rights law," the committee said in its report released this month.
“To be capable of justifying a proposed limitation of human rights, a legitimate objective must address a pressing or substantial concern and not simply seek an outcome regarded as desirable or convenient."
Attempting to increase the number of people using the PCEHR system may be regarded as a “desirable or convenient outcome”.
However, this did not mean it was addressing "an area of public or social concern that is pressing and substantial enough to warrant limiting the right [to privacy]”.
More here:
Always interested in seeing what was actually said I thought I would track down the Hansard and found these comments from Mr. Ruddock:
“One of the bills considered in this report is the Health Legislation Amendment (e-Health) Bill 2015. This bill seeks to amend the law relation to personally controlled electronic health records, which provides an electronic summary of an individuals health records. Currently a person’s health records can only be included on a register if they choose to opt in to the system. This bill would enable trials to take place, which could then be applied Australia-wide, to enable the health records of all Australians to be automatically uploaded onto the electronic database unless the person actively opts out of the process.
The committee considers that this raises significant privacy concerns which require further justification. In  particular, the committee questions whether the objective of the bill, in automatically uploading personal sensitive  health information onto the database in an attempt to drive increased use of the database by health care professionals, is a legitimate objective for the purposes of international human rights law. To be capable of justifying a proposed limitation of human rights, a legitimate objective must address a pressing or substantial concern and not simply seek an outcome regarded as desirable or convenient.
Thus the committee is concerned to know whether the limitation on the right to privacy is proportionate; in particular, whether there are adequate safeguards in place to protect an individual's privacy and whether the opt - out model is the least rights - restrictive way to achieve the objective the government seeks. As usual, I will write to the relevant minister to seek her advice on these important questions”
Well put Mr. Ruddock.
If you was to read the full report on which the comments are based go here:
Sadly Mr. Ruddock did not choose to ask the harder question regarding how legitimate the objective of enrolling the entire population into the PCEHR for their own purposes given there is no evidence I, or anyone else has seen, regarding the clinical value that will be added by this intervention.
The guts of the report is in the detail and this is from (p9-24) and in there a very large number of interesting issues are canvassed including how the disabled, the internet free etc. are to be handled
Last week I covered the debate on the PCEHR Bill where we learnt the following from a Labor Speaker:
“ Because this is a somewhat significant change, as I said, whilst Labor does not oppose these measures—in fact, we think they are sensible measures—we think the change requires some scrutiny in the other place to ensure that people's privacy is protected. As I stated well at the outset, Labor does not oppose the intent of this bill. However, we do believe there are elements—especially those that relate to changing the way information can be collected and shared—that do require further scrutiny. As I said, it is not that Labor opposes the principles—many of them do at face value appear to be very common-sense and necessary changes to meet the policy intent—but, given the extent of the changes, stakeholders with direct experience and responsibility in delivering health care and working with personally controlled electronic health records should have an opportunity to provide feedback on the bill.”
So looks like there will be a Senate Enquiry with evidence taken and so on. You can be sure that won’t be quick!
The discussion of the Immunisation Register in the same report is also interesting.
All in all, with what other stakeholders are saying and this speed-bump we are going to be watching this for ages now as more and more money gets wasted.
Maybe it will be all for the good in the end - when the thing is just dumped!
David.

7 comments:

Anonymous said...

Does this mean they could be breaking the law by introducing opt-in before clarifying the legal niceties around the privacy issues? Perhaps they will argue that by giving people the right to opt-out their privacy is not being compromised.

Anonymous said...

By giving people the right to opt-out should be fine provided they have not been compulsorily opted in in the first place.

The only way to be sure that privacy is not being compromised is firstly to let people voluntarily opt-in and then should they wish voluntarily opt out at any time.

That is the approach we have now - so the status quo should be preserved. No doubt Mr Ruddock's committee will arrive at the same conclusion in 12 or so months. In the meantime .............. I rest my case.

Bernard Robertson-Dunn said...

In the explanatory memoranda it says:

The Bill will implement the Government’s response to the PCEHR Review, specifically changes to the PCEHR system to change its name, prepare for new governance arrangements, improve usability of the system, and conduct participation trials. The Bill will also implement recommendations of the HI Review, and make other minor and clarifying amendments to improve the operation of, and align, the PCEHR system and the HI Service.

and

The Bill will enable opt-out trials to be undertaken ...

and

allocate $m57.7


If the Senate doesn't pass the bill, then these things can't happen.

Or have I got this wrong?

Terry Hannan said...

This discussion has so many relevant and important components but it reemphasises the innate futility of the current national eHealth model in Australia and as I read this from the remoteness of Chile I recall the words of Simon and Garfunkel. "When will they ever learn?"
Some of the implementations and projects that I have become aware of in the last 18 months from around the world - good example is here in Santiago, Chile at the Universidad Catolica- makes it apparent that Australia has reached 'stgnation in a whirlpool' point of eHealth progression.
Of course this is my own personal opinion and does not reflect those of others in the eHealth community.

Anonymous said...

It is about time that someone in politics woke up and thought that privacy might be an issue with PCEHR opt-out.

We have seen this silly, unproven idea [the PCEHR] transform from a patient-carried and controlled memory stick of health data to a centralised government-controlled database.

I believe about a billion dollars has been spent so far. Any lives saved yet?

Unfortunately, once public bureaucrats smell control over personal data they can't help themselves. They must have it, regardless of the remoteness of any possible benefit to individuals' health care.

It has been said PCEHR take-up won't happen with opt-in. Surely this means we are continuing to waste money on bureaucratic obsession if opt-out is pursued?

Anonymous said...

It makes no difference to Government bureaucrats - they will go ahead regardless confident in the knowledge that they will be protected by legislation and regulations (which can be changed at whim)and that there is nothing anyone can do about it. Even if the legislation isn't passed by the Senate for another 18 months that won't stop Mr Madden and ACeH from pushing ahead in the absence of any legislation being in place. Trample down the masses and suffocate the naysayers is their modus operandi.

Anonymous said...

Allie Coyne reports on three particularly disturbing points

1. The bill also doesn't include safeguards to ensure individuals are given enough time to opt-out, the committee said, and there is no ability for individuals to erase their record once it has been created.

2. The committee argued there were no legislative safeguards to ensure people would be appropriately notified of their impending registration to the scheme.

3. Additionally, it wasn't clear why the current opt-in model hadn't worked, the MPs said.

Oct 16 http://www.itnews.com.au/news/opt-out-e-health-records-may-violate-privacy-mps-410563