Thursday, November 14, 2013

Draft PCEHR Enquiry Submission November 2013 Version 2

Note this is a condensed summary document. I do not believe anything contained here is not supported by detailed evidence which can be found on my blog.
Background To and Core Issues Regarding the PCEHR Program.
The idea for the Personally Controlled Electronic Health Record emerged from the NHHRC, as an afterthought, and appeared, without any significant consultation, in the May 2010 Budget as a $467M 2 year project that was to go live on July 1, 2012. Further funding was to be contingent on the system delivering benefits - but nevertheless more funding as provided to the present day.
There was no cost / benefit studies undertaken on the plans and it was assumed the benefits case for a quite different NEHTA IEHR proposal was assumed to be correct - despite the fact that many of the drivers of the benefits were not present in the PCEHR (e.g. Clinical Decision Support). A public consultation on the original PCEHR Proposal resulted in virtually no change to the plans despite a lot of sensible concerns being expressed.
The PCEHR went live, with some issues that appeared to be related to absurdly tight delivery guidelines applied by the then Minister, in July 2012 and since then it has been gradually enhanced and considerable work has been done to integrate access to the PCEHR from the major General Practice Management Systems. This explains why some 16 months later the system is still not delivered and fully functional. Politics has also led to ‘function creep’ with announcements of additional functionality before the system was stabilised.
Nowhere in Western World has a major Health IT project of this scale, with the planned mode of operation been either delivered successfully in such a time-frame or shown to offer benefit. The design has been based on intuition rather than evidence and on the basis of clinician and patient reaction this seems not to have been correct. (The evidence for this lies in the fact that despite over 1 million people having registered for a record only 30,000 or so have actually added some of their information to the record - so the public is not using it).  
The Three Major Issues
Ignoring all the usability, medico-legal, workflow, workload, data ownership, data control and clinical relevance issues (which are all very, very important) to me there are three major problems. The first is that the PCEHR can’t be a system to properly and fully serves the needs of professional clinicians and patients simultaneously. They have dramatically different needs and just who the PCEHR is for and what it is actually meant to do for them is crucial. If it is for patients the system lack and really can’t deliver the functions international experience shows are valued (appointment making, repeat prescriptions, direct e-mail to their GP and access to approved laboratory results (not yet available but maybe possible). If it is for clinicians it is too slow, lacks decision support, external communications and the list goes on. 
The second issue is, bluntly, that the concept of patient control just alienates clinicians as a place to source information that can be trusted. Clinician trust is vital and the issue of being able to trust information crucial, as if information is either inaccurate of incomplete then there is a real risk of patient harm. From a practical clinical perspective it is much more sensible to start a patient’s assessment and treatment from the ‘ground up’ than try to sort out what can believed and what can’t be. There are real medico-legal implications in all this.
The third issue - which relates to the second is data quality. Obviously trust and data quality are inextricably linked. We have seen many errors in the data uploaded to the PCEHR already from Medicare Australia data sources - which includes some in my PCEHR record.
Throughout the conceptual development, actual development and roll out the drivers of progress have been NEHTA and the then DoHA who have both been actively hostile to many private sector initiatives and who have actively corrupted and distorted the e-Health Standards setting processes.
Over the last two to three years the leadership and governance of the PCEHR Program and other initiatives has been secretive, non-transparent arrogant and un-consultative.  
The outcome of all this is that we have a system which was not recommended by the 2008 National E-Health Strategy, which does not serve anyone’s needs well, which is said to have now cost near to a billion dollars, which is strongly suspected to be intended to be an administrative and not clinically focussed system which have so far delivered virtually no benefits to patients or their doctors.
What Is To Be  / Should Be Done From Here?
To put is simply, for me, what is needed is that the policy makers decide (in consultation with relevant stakeholders) what it is they want in a national system and just who that system is to be deigned to serve.
It goes without saying that what follows assumes dramatically improved leadership, governance and transparency which has been evidenced to date by NEHTA and DoHA in the e-Health domain.
If asked, my preferred approach to e-Health going forward, would have two broad components.
The first would be based on enhanced connectivity and functionality for current practice management systems used by GPs, Specialists, Allied Health and Hospitals. The objective would be to maximise, standardise and optimise the information flows between all actors in the health system and thereby improve the patient experience as well as the quality and safety of care. Much of this could be achieved working with the private sector. As part of this effort there needs to be a major focus on data quality and interoperability.
Part of the enhancements would be to design (as is happening in the UK and the US) ways that patients could interact electronically with their clinicians to see the benefits cited above.
The second would be to develop regional geographic shared record hubs which would hold a carefully considered small  subset of health information to assist Hospitals and other clinicians offer care (with the patient’s consent) based on information held on the shared records in emergent and travel situations. These hubs I envisage as being developed, trialled and refined over time with an active network to learn what was working, what was not and how the good ideas that are working can be spread.
As far as current activities are concerned I would see the continuation of the core e-Health infrastructure (SMD, IHI Service, Terminology Support etc.) and would consider continuing support of the PCEHR until such time as regional shared record hubs can be put in place. Longer term I believe the overall architecture of the PCEHR is so flawed that is should be retired.
I would also fundamentally restructure NEHTA and the e-Heath parts of DoH to improve transparency, stakeholder engagement etc. I believe all this is consistent to the 2008 E-Health Strategy and likely to be consistent with the planned 2013 refresh.
There is a lot of detail that can be filled in to flesh out these ideas but overall it seems to me an approach of this type can achieve the dual objectives of quality professional / clinician support and communication with patient interaction to the extent they desire can be mediated. Taking this rouht would also re-engage Government with the private sector and allow the Government to focus on the things it needs to do while having the private sector do what it does best and would be consistent with the National E-Health Strategy
Please Note: I am more than happy to discuss these ideas with the review panel if desired.
References and Major Links.
Tuesday, April 12, 2011

The PCEHR Concept of Operations - As Released Today - Is Just Not A Goer

6 November 2013, 2.29pm AEST

Unfixable: time to ditch personally controlled e-health record scheme

A/Professor David Glance.  Director of the UWA Centre for Software Practice UWA

The e health revolution—easier said than done

Research Paper no. 3 2011–12
Dr Rhonda Jolly
Social Policy Section
17 November 2011

MSIA: The eHealth paradigm and the PCEHR

Written by Emma Hossack on 18 May 2012.

Opinion: the eHealth world moves on

Labor promised so much, delivered so little, on e-health

Emma Hossack is the secretary of the Medical Software Industry Association and CEO of Extensia. The views above are her personal views alone.

Australia: Update on Personally Controlled Electronic Health Records - legal and privacy issues

Last Updated: 28 October 2013
Lastly my blog at is searchable with over 3000 articles since 2006.


Bernard Robertson-Dunn said...


re "Clinician trust is vital and the issue of being able to trust information crucial, as if information is either inaccurate of incomplete then there is a real risk of patient harm. From a practical clinical perspective it is much more sensible to start a patient’s assessment and treatment from the ‘ground up’ than try to sort out what can believed and what can’t be."

Can I suggest that you change the phrase "much more sensible" to "safer"?

IMHO, the PCEHR as is currently exists is unsafe. This one point, that combines the issues of data accuracy, data completeness, usability by health professionals and the potential to do harm, is the most compelling argument for a total rework of the whole eHealth initiative.

Dr David More MB PhD FACHI said...