Sunday, May 31, 2015

The Department Is Conducting Some More Non-Consultation On The PCEHR And Its Successor. Looks Like A Power Grab To Me!

This arrived a couple of days ago.
Subject: Have Your Say on eHealth Legislation [SEC=UNCLASSIFIED]
Date:        Thu, 28 May 2015 05:20:52 +0000
From:       ehealth legislation

Have your say on eHealth legislation: Discussion Paper

An Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper has been released and your comments are invited.   This paper is available at www.ehealth.gov.au.
The discussion paper outlines proposed changes to the legislative framework of the personally controlled electronic health record (PCEHR) system and Healthcare Identifiers (HI) Service.  The paper covers issues of governance, opt-out trials, obligations of participants in the PCEHR system, and handling of healthcare organisations’ healthcare identifiers.  It also proposes a change of name to the more user-friendly ‘My Health Record’.
These proposed changes should not be considered final.  During the legislative development process further changes can arise as the result of consultation with the public, healthcare sector and government agencies, privacy impact assessments and legislative constraints.  The proposals are also subject to Government decision and Parliamentary agreement.
The purpose of the paper is to encourage discussion and feedback within the community and healthcare sector about the proposed legislative changes.
You can have your say on the Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper by emailing your submission to ehealth.legislation@health.gov.au or by uploading it at www.ehealth.gov.au.  Alternatively, you can send your submission to:
PCEHR/HI Discussion Paper Feedback
Department of Health
MDP 1003
GPO Box 9848
CANBERRA ACT 2601
The period for making submissions closes at 5:00 p.m. (Australian Eastern Standard Time) on Wednesday 24 June 2015.
Please be aware that we may collect your personal information when you make a submission.  For more information about how we handle this information go to the Department of Health’s Privacy Policy.
You can find out more about the discussion paper by reading the fact sheets for individuals and healthcare providers that are published with the discussion paper on www.ehealth.gov.au.
Yours sincerely
(Signed)
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Here is the summary of what it is all about:

Electronic Health Records and Healthcare Identifiers: Legislation Discussion Paper

Overview

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.

Why We Are Consulting

The purpose of this consultation is to seek feedback from the community to inform the development of legislative changes
These proposed changes should not be considered final.  During the process of legislative development further changes can arise as the result of consultation with the public and government agencies, privacy impact assessments and legislative constraints.  The proposals are also subject to Government decision and Parliamentary agreement. 

Here is the direct link and download page.

The document is about 32 pages (3 pages of abbreviations at bottom!) and it is really what is missing rather than what is explained here.
To me there were two very interesting parts of the document:

First it seems there seems to have been some consultation on the PCEHR Review (that I seemed to have missed) and which came up with some interesting findings
“Stakeholders expressed strong support for the continued operation of a national shared electronic health record system and for the findings of the PCEHR Review.  In particular, there was strong support for the move to an opt-out system accompanied by an effective public awareness and education campaign, and for retention of the current personally controlled nature of the record. 
Key learnings from the consultations are described below:
  • Individuals and clinicians want to see more representation of their voices and experiences in the ongoing design and implementation of the PCEHR system.  They don’t necessarily want a seat on the board of the governing body but do want to ensure that there are mechanisms by which different perspectives, impacts and expertise can be fed into the governance process through effective consultation.
  • There is considerable uncertainty in the clinical and vendor community about the future of the PCEHR system.  More concrete actions are required to get stakeholders involved in progressing the adoption of the PCEHR system as an ongoing element of the Australian health system.
  • Consultations highlighted that knowledge and understanding of the PCEHR system is patchy at best across all stakeholder groups and is particularly poor amongst the general public.  While awareness is better amongst healthcare providers, the perception of the PCEHR system is quite poor, and its benefits are not generally understood nor accepted at the current time.  Awareness raising will be particularly important ahead of any proposed introduction of an opt-out model.
  • In general, individuals understand when the purpose and intent of the PCEHR system is carefully explained.  This suggests that an information campaign that is benefits-focused and clear about what they need to do will be necessary.
  • Like the general public, clinicians need to see the benefits of the PCEHR system and they need to understand that there is a pathway to improving the functionality and utility of the existing system.  They also need supporting materials in order to assist them in discussing the impact of the opt-out model with individuals because the consultation suggests that many individuals will turn to their general practitioner for advice.
  • While the majority of stakeholders strongly supported the move to an opt-out model, concern was raised about precisely how an opt-out model might be designed and implemented.  Careful design of the opt-out model will be required to manage stakeholder concerns and to ensure stakeholders clearly understand how and why the opt-out model will be introduced.
  • While many individuals did not consider that they would necessarily use the access controls and notifications provided in the PCEHR system, they all acknowledged the need for these controls to be retained.  Individuals stressed the need for simple mechanisms.
  • Meaningful use of the PCEHR system for healthcare providers will be driven by the utility and content of the PCEHR.  This will require a focus on improving the usability of the PCEHR system, addressing accessibility issues for those segments of the healthcare provider community such as allied health practitioners who aren’t well served with PCEHR compliant software solutions, and a concerted effort to drive provider participation.
  • Most stakeholders were comfortable with the types of content that the PCEHR system can currently hold, however there was concern that very little of this content is being uploaded.  It is therefore important to drive population of PCEHRs.
  • The introduction of the PCEHR system into clinical practice requires a complex registration process, implementation of new software capabilities and changes to clinical practice.  To enable individuals and healthcare providers to start using the PCEHR system they will need access to local support capabilities that will provide the on-the-ground help they need.
  • The current roll-out of the PCEHR system seems to have bypassed the private hospital sector.  Getting this sector more involved, understanding its drivers and involving its representation in clinical advisory committees will be necessary to ensure completeness of coverage and benefit for individuals.
  • Vendors consider that greater use can be made of international standards rather than having to adopt standards specifically designed in Australia.  They also want more stability around standards, and want to know in advance when they will be introduced or changed and what they will contain so they can plan their business accordingly”.
So, in summary the Department has been told the system does not actually work very well and no one really understands or wants it! What is missing from this document is any suggestion of just how all this will be fixed!
Second is that the document proposes as little change as possible in the transition from NEHTA and they really want to control everything:

3.2.1     Establishment of ACeH

ACeH will be established as a new corporate Commonwealth entity through rules made under the Public Governance, Performance and Accountability Act 2013 (PGPA Act) and the PGPA Rules.

Timing of ACeH establishment

ACeH is proposed to commence operations from July 2016.

Disbanding current arrangements

The PCEHR Act currently provides that the System Operator must have regard to advice and recommendations provided by the Jurisdictional Advisory Committee (JAC) and the Independent Advisory Council (IAC), and that the Minister must consult IAC and JAC before making any PCEHR Rules.
JAC and IAC will be abolished as part of the new governance arrangements and this will require amendments to the PCEHR Act and PCEHR Regulations to remove all provisions associated with their establishment, operation and the need for the Minister to consult with JAC and IAC before making PCEHR Rules.
Under the new governance arrangements, the roles of JAC and IAC will respectively be performed by the new ACeH Jurisdictional Advisory Committee as recommended by the PCEHR Review, and an independent assurer reporting directly to the Minister. 

Transition to new arrangements

As recommended by the PCEHR Review, an implementation taskforce will be established (administratively) from July 2015 to oversee and advise on the design, establishment and transition to the new national eHealth governance arrangements, including transitioning functions from NEHTA.

ACeH functions

ACeH will assume responsibility for governance of all national eHealth operations and functions, including:
(a)    responsibility for PCEHR system operational activities as the PCEHR System Operator, currently undertaken by the Department of Health; and
(b)   broader eHealth system operations now managed by NEHTA.
The Department of Health will retain responsibility for national eHealth policy.

ACeH Board

To achieve broader eHealth end-user representation in the governance of eHealth, it is proposed the ACeH Board and its advisory committees will include individuals with expertise such as: 
(a)    healthcare provision;
(b)   consumer of health services;
(c)    IT systems and innovation including health informatics;
(d)   governance;
(e)   clinical safety; and
(f)     privacy and security. 
Representatives of jurisdictions and the Commonwealth will also be included on the Board.  The Commonwealth Minister will appoint an independent chair in consultation with all states and territories.

ACeH staff

It is anticipated that ACeH would employ some staff under Australian Pubic Service (APS) conditions and other staff under non-APS conditions.   The Rules establishing ACeH could make provisions for such employment arrangements.
The CEO, with the approval of the ACeH Board, would determine employees’ terms and conditions, as well as the engagement of consultants to assist in ACeH performing its functions.
-----
So the Department will now call all the policy shots and the new Board will just be operational and also loaded up with Jurisdictional bureaucrats! The mass move of staff from NEHTA to ACeH seems to be on!
While time will tell I suspect there is little good going to come out of this - and that more power will trickle to the Department who have shown over the last few years they are strategically useless and lacking insight into what is needed!
Pretty sad.
David.

18 comments:

Anonymous said...

"So the Department will now call all the policy shots and the new Board will just be operational and also loaded up with Jurisdictional bureaucrats! The mass move of staff from NEHTA to ACeH seems to be on!"

PigstotheTrough 2.0!!!!!!

What a fiasco having a workforce with some under public service employment agreements, and the rest under another.

Anonymous said...

So who does Standards? and who is running conformance and accreditation? or has the PCEHR become the de facto for everything? At least (health?) informatics get recognised, although almost as an after thought.

What's that old saying about breweries and organising?

Bernard Robertson-Dunn said...

I'm a little puzzled.

In the eHealth briefing last week, Paul Madden had a bullet point on one of his slides that said the commission would be "one governance process for all eHealth activities). I asked Paul if that included state based and other eHealth systems or just the Federal system. His response was that the scope was all Australian eHealth systems, including those run by the states.

However, the paper says:

" ... it is proposed that new eHealth governance arrangements be established. From July 2016 a new organisation, the Australian Commission for Electronic Health (ACeH), will be responsible for all national eHealth systems including the PCEHR system."

In other words the scope of ACeH will be national eHealth systems not state based or other eHealth systems.

What Paul Madden said at the briefing and what is in the paper are different and that ACeH is only concerned with national eHealth and the Department of Health is only concerned with national eHealth policy.

What is also missing is any discussion of information flows into and out of other systems. The PCEHR is not an isolated system, it is (or it is intended) that it be integrated into other systems. There don't seem to be any controls or rules regarding information in these other systems.

Does Personal Control extend to these systems? Do Privacy and Security requirements that apply to the PCEHR apply to these other systems as well?

This discussion paper is silent on these matters.

Anonymous said...

Bernard at the meeting I attended Paul Madden said that when the TWO Regional trials commence there will be a TWO MONTH period in which people will be able to Opt-out if they wish to. Participants(those who have not opted out)will have access to an EMPTY SHELL of the system and over the next SIX WEEKS they will be invited to IMPLEMENT THEIR CONTROLS.

He confirmed this opportunity to SET THEIR CONTROLS would last only for SIX weeks.

Surely this means the record is PERSONALLY CONTROLLED which leads one to ask why are they attempting to change the name and replace PCEHR - PERSONALLY CONTROLLED ELECTRONIC HEALTH RECORD with MY HEALTH RECORD? I and others thought at the time that was confusing and deceptive.

Bernard Robertson-Dunn said...

Re the trials.

This is in the discussion paper but many things are unclear, such as if someone has not opted-out in the two month period prior to a record being created, can they opt out later. Similarly, if they have not set their access controls in the initial six weeks (called the transition period) after the record is created, can they do so later.

Re the name and control, the paper says :

"it is proposed that the PCEHR be renamed the My Health Record. It is considered that this name will better reflect the partnership between individuals and healthcare providers. There will be no reduction of the personal controls available for individuals to manage their PCEHR, and the system will continue to support the principle of placing individuals at the centre of their healthcare.

and

"While opt-out participation means that the PCEHR system will no longer be relying on the consent of individuals but on legal authority, the system will continue to offer the same level of personal control over a PCEHR and will continue to give information the same level of privacy and security protection."

Anonymous said...

June 01, 2015 10:33 AM quoted from the Discussion Paper thus "the paper says: "it is proposed that the PCEHR be renamed the My Health Record. It is considered that this name will better reflect the partnership between individuals and healthcare providers".

Pardon my French. If it's My Health Record there is no way I am going to let the Government own or control it.

Anonymous said...

Perhaps GHR or GCHR or GCEHR would be better. If it's not Personally Controlled then it must be Government Controlled.

Terry Hannan said...

Government report-“Consultations highlighted that knowledge and understanding of the PCEHR system is patchy at best across all stakeholder groups and is particularly poor amongst the general public. While awareness is better amongst healthcare providers, the perception of the PCEHR system is quite poor, and its benefits are not generally understood nor accepted at the current time. Awareness raising will be particularly important ahead of any proposed introduction of an opt-out model.”
David-“So, in summary the Department has been told the system does not actually work very well and no one really understands or wants it! What is missing from this document is any suggestion of just how all this will be fixed!”
David, ‘linking’ your comment with the one I selected above from your summary posting makes it appear so damn obvious that even the ‘implementers’ have a ‘patchy knowledge and understanding’ of the PCEHR project.
There is no apparent indication of the clear precises steps to lead the project in any FUNCTIONAL direction.
The intimate working structure of the PCEHR as it is now seem and “perceived” would seem to be inherently wrong.
There is also a component that I see as guaranteeing this “PCEHR as the incorrect vehicle for health care” and that is the problem highlighted by Lucien Leape in his publication “Five Years After To Err Is Human. L. Leape. What Have We Learned? JAMA. 2005;293:2384-2390”. He states that “clinicians are slow to change and the “culture of medicine” is a great barrier to effective change.

Use the wrong tools (namely the current PCEHR) and this culture becomes more ingrained and guarantees the projects failure.

Anonymous said...

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 doesn't do either but it does create more confusion.

Anonymous said...

As a vendor we have taken a corporate decision not to invest any more time or effort in responding to bureaucratically led eHealth consultations. The enormous investment we have made over the last 8 years or so in lodging eHealth submissions in response to Government calls has been of no benefit to us. We know we are not alone.

Anonymous said...

As a vendor I have also come to the same conclusion. They consume your time and $ for no benefit and no consideration, to them you are expendable in their grand plan. The grand plan is a folly.

Given the definition of folly : "a costly ornamental building with no practical purpose, especially a tower or mock-Gothic ruin built in a large garden or park"

Can we suggest the "fixing" of the PCEHR include some gothic decorative UI features?

Anonymous said...

Geez you vendors are slow lot in having the penny drop. At this rate, the only surprise is that you are still in a profitable business, or that may well be assuming too much!

Anonymous said...

I think you will find vendors will stick around, after all you get everything on a plate, NEHTA designs and maintains quality national specifications that, along with software, make developing a low cost exercise. Thanks to DoH we provide you validation and training services.

Anonymous said...

And they pay well too in peanuts and pain, all good masochistic reasons to stick around while our businesses continue withering on the stick.

Anonymous said...

Not to mention the cool new gothic theme for MyHealthRecord!

Anonymous said...

Anon June 04, 2015 7:02. That is an interesting set of statements! Do you have much experience in implementing the PCEHR specifications? If so which ones? I ask out of interest as I find the resources relating to indervidual solution bundles quite confusing and rather misaligned, it is almost like multiple companies that don't talk to each other have created each component. Maintenance? Not sure maintenance is the right word.

Anonymous said...

Re: Anonymous, June 04, 2015 7:02 AM
"..NEHTA designs and maintains quality national specifications that, along with software, make developing a low cost exercise..."

I'm assuming your comments are sarcastic and need to come with a warning.

So called standards were 1 to 3 years late (for more final not drafts) and we are still missing some standards that would promote interoperability and wider use of the data. The term "data" is used to loosely because an EMR (used by Health providers not PCEHR) with PDF files containing images of text that aren't searchable have no value to automated systems for extraction and processing. PCEHR != eHelath, eHelath != PCEHR. The eHealth view of the government needs to be much bigger than just a PCEHR.

~~~~ Tim

Anonymous said...

I made the assumption it was a joke, there is no way anyone could make those statements and keep a straight face!