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 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).
Ignoring all the usability, medico-legal, workflow, workload, data quality, data ownership, data control and clinical relevance issues to me there are two 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.
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 than 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 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.
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 shared record hubs which would hold a carefully considered 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 continue support of the PCEHR until such time as regional shared record hubs can be put in place.
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.
What would others do?
Critical Link:
http://aushealthit.blogspot.com.au/2011/04/pcehr-concept-of-operations-as-released.html
David.
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