Saturday, July 11, 2015

To Date I Have Never Seen A Meaningful Or Sensible Directional Change In Response To Any PCEHR Consultation! Will Things Be Different This Time And How Will We Know?

A number of weeks ago we had a request for input on future legislation for the IHI Service and the PCEHR.
Here is the summary that was provided regarding what it was all about.

Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper


The Australian Government is proposing changes to the personally controlled electronic health record (PCEHR) system, including renaming it the My Health Record system, and the Healthcare Identifiers Service, in response to reviews of each system undertaken in 2013.
The Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper outlines proposed changes to the legislative frameworks of the PCEHR system and Healthcare Identifiers Service that would support the Government’s proposals.   
This paper is intended to provide a plain English description of the proposed legislative changes, and a brief analysis of why the changes are needed.  It covers issues such as the establishment of the Australian Commission for eHealth, changing the name of the PCEHR system to the My Health Record system, opt-out trials, obligations of participants in the PCEHR system, and the handling of healthcare organisations’ healthcare identifiers.
The purpose of the paper is to encourage discussion and input from the public on the proposed changes.
You can find out more about the paper by reading the fact sheets for individuals and healthcare providers.
Here is the link:
The key additional piece of information on the same page was as follows:

Key Dates

Consultation is Closed

Ran from 28 May 2015 to 24 Jun 2015
The resources provided included the following:

Related Information


At the point the consultation concluded and submissions had been received the following paper suddenly appeared:

Privacy Impact Assessment Report 2015 – Opt-Out Model

The Privacy Impact Assessment (PIA) analyses the potential privacy risks and impacts of implementing an opt-out approach for participation in the Personally Controlled Electronic Health Record at a national level reflecting the recommendation of the Review of the Personally Controlled Electronic Health Record (PCEHR). The PIA was commissioned following the stakeholder consultations held between July and September 2014, and intended to inform the consideration of options for the implementation of the opt-out recommendation.

In conducting this PIA, a range of assumptions have been used to determine the possible flows of information as well as the processes for communication and opting out of the system. The report makes recommendations for managing, minimising or eliminating negative impacts on the privacy of an individual’s personal information.

The PIA identified a number of key privacy risks relating to the Opt-Out model including ensuring that:
  • individuals are made aware of how their personal information will be handled and how to opt-out or adjust privacy control settings so they can make informed decisions; and
  • there is legislative authority for the use and disclosure of identifying information and healthcare identifiers.
The PIA made 46 recommendations that would be appropriate at a national level, to address these key privacy risks including:
  • amendments to the Personally Controlled Electronic Health Records Act 2012 and Health Care Identifiers Act 2010 Act;
  • developing appropriate forms of communication to better inform and reach vulnerable and disadvantaged individuals;
  • further consultation and publishing of the consultation and PIA reports to increase transparency about privacy risks and benefits of the Opt-Out participation model; and
  • re-designing the labelling, layout and explanation of various privacy control settings such that it is clear, neutral, explicit and easy for individuals to understand.
Many of the findings in this PIA have been used in forming the approach to trialling participation arrangements, including opt-out as announced in the 2015-16 Federal Budget. It has also been used to frame the proposed legislative amendments and planning for the trials.

Work is underway with states and territories and Primary Healthcare Networks on trial site selection, and further detailed planning including the evaluation criteria and methodology. A further PIA will be undertaken specifically for the opt-out trials as funded in the 2015-16 Federal Budget, and will be made available once accepted by the Department of Health.

Accessible word version of the Privacy Impact Assessment Report 2015 - System Opt-Out Model (Word 391 KB)
Printable version of the Privacy Impact Assessment Report 2015 - System Opt-Out Model (PDF 2076 KB)
Here is the link:
What is astonishing is that there is no direct link to this from the consultation page and that as far as I can tell the PIA - which was finalised a week before consultation began - was not made available until early July!
Given a key element of the consultation was with regard to Opt-Out and Privacy surely this document would have been strongly highlighted on the consultation page. But no it was just not made obvious and apparently was not even available before consultation finished - leaving all sorts of groups essentially wasting their time on a major aspect of the consultation. The gap is made even worse by the fact that the PIA had 46 recommendations to make things better. Maybe having those could have assisted those writing submissions?
The results of last week’s poll seems to confirm the reader view DoH is not really serious with its listening!
In summary - the behaviour of the e-Health Branch of DoH is suggesting to me, despite a lot of critical submissions and a PIA that will require a great deal of work to address, is just planning to press on and again ignore the Submissions.
If there is not a published review of the submissions and the PIA, as well as the submissions themselves, from DOH, with the details of how all the serious issues raised will be addressed, before work and the trials begin, we can be sure we are being ‘ played for mugs’, and ignored.
As they say actions speak louder than words! Time will tell.

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