Here is a first cut for comment.
Submission to the Commonwealth Department of Health and Ageing.
Topic: The NEHTA developed Personally controlled electronic health record (PCEHR) Draft Concept of Operations (ConOps for Short)
Date May, 2011
Submissions Due May, 31, 2011
Address for submissions:
GPO Box 9848
Canberra ACT 2606
Dr David G More BSc, MB, BS, PhD, FANZCA, FCICM, FACHI.
Author’s Background. The author of this submission is an experienced specialist clinician who has been working in the field of e-Health for over 20 years. I have undertaken major consulting and advisory work for many private and public sector organisations including both DoHA and NEHTA.
I previously provided a Submission on the PCEHR proposal to NHHRC in May, 2009 and the views expressed in that submission remain my position despite the work undertaken by DoHA and NEHTA since.
This submission is available here:
Executive Summary of Submission.
The ConOps proposal provided by NEHTA is an utterly flawed and disastrously conceived document which has taken NEHTA’s earlier Shared or Individual EHR proposals and seen the ideas contained within distorted to create a proposal which at once does not achieve the possible benefits of the earlier proposals while being essentially useless at a clinical level.
I believe that in the presently proposed form the PCEHR is doomed to not be adopted or used by either consumers or clinicians and will become a very expensive failed ‘white-elephant’.
A total re-consideration of virtually all aspects of this current ConOps offers the only chance to claim success from an otherwise doomed set of proposals.
Background to the PCEHR Proposal.
As a consequence of a series of recommendations in the Final Report to Government of National Health and Hospitals Reform Commission (NHHRC) in 2009 the subsequent Commonwealth Budget allocated almost half a billion dollars over two years to make a PCEHR available to all citizens who wanted one by July 2012.
As the PCEHR has evolved - largely away from the public gaze and in secret - it has morphed into a conceptual Health Summary and then a series of Event Summaries. The Health Summary contents are intended to be the basic individual demographic details and the information that is normally held - either electronically or on paper - in the General Practitioners Summary Record. This would include allergies, regular medications, key elements of history and current diagnoses. The Event Summaries are envisaged to be such things as a set of pathology results, referral letters and so on.
The idea is that the patient will be in control of this information and will, if they agree and consent, make the information held in this record available to clinicians caring for the patient.
The patient PCEHR record is to be held by a PCEHR system - presumably run by the Commonwealth Government - which will be accessible via a web portal for a clinician, with permission, to review. At a later date the patient will also be able to contribute their personal information and comments should they choose. The system is apparently intended to be a lifelong record which will be accumulated over time.
At present the system is intended to be available for patients who choose to have a PCEHR to register for access by July 2012 - now just 14 months away. The system is presently planned to operate in an ‘opt-in’ fashion where an individual takes a positive decision to register for and establish a PCEHR.
Key Topics Addressed in This Submission.
1. Proposed System Architecture
As described in the section on the background to this proposal what is being created in this system is a system which will operate in parallel to the systems used by professional care providers and will contain a partial sub-set of the information held in their systems.
As currently envisaged it is neither fish nor fowl, by which I am saying it is not a highly refined abstract of that clinical information which is needed for emergency care nor a complete longitudinal record which replace what is currently used by those providers who use electronic records.
By falling in an inconclusive middle ground the planned record has no clear user audience and does not seem to have any real place. The proposal brings with it some almost insurmountable issues around the currency, reliability, and quality of the information held within the PCEHR system and this situation will mean it will be poorly used. Legal liability and related issues around the possible erroneous interpretation of data held within the system will also mean a lack of trust and adoption of the system by many clinicians.
2. Sustainability of Proposal
It was never likely that a two year half billion dollar national e-Health program initiated from what was essentially a ‘standing start’ would be able to demonstrate useful outcome in the time allocated - as has been demanded by Minister Roxon. Every other national program has taken at least 3 times that period to even begin to show results.
The application of such politically driven deadlines, with no commitment to continued investment and funding adds substantially to the risks of the program as it distorts quite unreasonably what is being attempted and what would be planned - and have a higher chance of success - in more realistic circumstances.
3. The Politics of Names and Actual Reality.
The issue here is that Shared EHRs (as described on Page 108 and 109 of the Conops) are not PCEHR systems in any sense of the word. Each of these initiatives are, in fact, Shared EHR systems intended to be used by clinicians and not by patients. There is NO experience anywhere in the world with the model proposed in the ConOps.
The statements made at the top of page 108 are deliberately distorting of the reality that the NEHTA proposed IEHR and the earlier HealthConnect Shared EHR are very different from what is proposed with the PCEHR:
“The Strategy identified a national Individual Electronic Health Record (IEHR) System as a high priority. The Strategy envisaged the IEHR as:
A secure, private electronic record of an individual’s key health history and care information. The record would provide a consolidated and summarised record of an individual’s health information for consumers to access and for use as a mechanism for improving care coordination between care provider teams. [AHMC2008]
Since the Strategy was originally developed, the term ‘PCEHR’ is now preferred as it better aligns with the recommendations from the National Health and Hospitals Reform Commission which recommended that a national approach to electronic health records should be driven by ‘the principle of striving to achieve a person-centred health system.’ [NHRR2009].
In 2010, the Government has invested 466.7 million in the first release of a PCEHR System.”
To suggest they are the same or even quite similar is just dishonest. Equally it is dishonest to claim the IEHR was a high priority in the National Strategy - it simply was not.
It is also quite surprising to see NEHTA claim consultations on HealthConnect which were conducted 5+ years ago and many of the other consultation processes cited on Page 103 bear any relevance to the PCEHR proposal.
4. Lack of Evidence Regarding Benefits.
Again this is an area where both NEHTA and the Department of Health have been less than frank with the public.
All the modelling undertaken by NEHTA and DoHA has indicated that it is providing clinicians with reliable information at the point of care (for medication management and so on) and providing clinical decision support is where the major benefits from e-Health can be obtained. However what we see in the ConOps, buried on page 18, is :
“2.8.1 Clinical decision support
The PCEHR System will not provide clinical decision support services. It is intended that the PCEHR System will provide information to help drive clinical decision support algorithms and the industry and healthcare professions will take the lead on delivering clinical decision support services.”
No business case exists to justify the PCEHR. (NEHTA did develop one a year or so back for the IEHR, but that is not really in any way comparable as it is quite different in architecture and intent.) This alone should cause some alarm. At best we have very sloppy thinking, at worse we have downright deception.
5. Consent Model.
At present it is proposed that consumers will have the option of signing up at a PCEHR for the proposed electronic record as of July 1, 2012. Signing up will be totally voluntary i.e. the system is conceived as an ‘opt-in’ system. Additionally, at any point the consumer will be able to inactivate their PCEHR as well as decide with parts of the PCEHR will be accessible to whom. As an example a spouse might have complete access to the others record but the same consumer may choose to make some sections of the record inaccessible to their GP. Equally the consumer can make quite the reverse decision. These decision can be changed at any point.
The problem with this ‘opt-in’ approach is that it is only successful if there is sufficient utility and value provided by the PHR to stimulate adoption. The functionality that has been found to be most valued by consumers include being able to arrange appointments, request prescription repeats and access a secure e-mail messaging system to seek information and explanations related to their care. Consumers also find it useful to have access to test results and other information sources.
Sadly the first mentioned three functions are not planned in any proposed release of the PCEHR and provision of results information is likely to be a number of years off. The net result of this approach would seem to suggest a very low adoption and use of the PCEHR system is highly likely.
Additionally there seem to be a very limited number of circumstances when a practitioner would want to access an individual’s PCEHR given that most of the information held in the PCEHR, other than the consumer contributed material, will already be held in the provider’s clinical system.
The convoluted plans for the consent model and the potential incompleteness of what may be there when access is granted will greatly limit clinician’s interest in obtaining access to the consumer PCEHR.
Overall, at best, significant usage of the PCEHR will take many years to evolve and the potentially transformative benefits of other architecture and consent models will come very late if at all.
6. The Lack of Appropriate National Governance and Leadership in Australian E-Health.
In order for any National E-Health Program - such as the PCEHR - to be successful there are a number of critical success factors that appear to need to be in place based on international experience. These include top level political commitment at Cabinet level, stability of long term and adequate funding, expert national leadership, appropriate consultative and governance frameworks and an agreed national vision and consensus on the way forward.
I would contend that Australia is presently lacking most of these critical success factor with but 2 years funding agreed, division of responsibility for the PCEHR between NEHTA and the Commonwealth Department of Health, no single point accountability for PCEHR delivery and a forward plan which essentially ignores the agreed National E-Health Strategy which was approved in 2008.
7. The Lack of A Trained Workforce and Plans To Develop Such Capability.
In July 2009 the Department of Health and Ageing received a Review of the Australian Health Informatics Workforce. This report said we did not have enough staff capability in the domain and that there was no apparent plan in place to correct the deficiency. As far as is presently know there has really been no significant progress in the two years since the report was produced, and the skills and capability gap remains and is probably worsening if the number of job vacancies advertised by NEHTA is any guide.
As for supporting a major national implementation of the scale of the PCEHR this is simply not possible.
8. Information Sources and Lack of Clinician Incentives
The ConOps document seems throughout to have as an underpinning assumption the belief that clinicians (and diagnostic service providers) will be so excited by the prospect of what is to be offered by the planned PCEHR that they will spend their own resources to provide the technology and work effort involved to populate the PCEHR with their in-house information on individual patients at their (the providers) expense.
With the ongoing financial pressure on diagnostic service providers and clinicians currently being applied by the Commonwealth Government such altruism in the context of such unproven and potentially time consuming technology is simply not going to happen without substantial financial carrots being provided.
It needs to be clearly appreciated that without enthusiastic co-operation of the clinical community the PCEHR will be simply a useless empty vessel which will be of no use to either consumer or clinician.
9. Privacy and Security Concerns
It is unnecessary for this document to rehearse the potential privacy and security issues that surround the creation of a national EHR system.
It is enough to say that a range of technical and privacy experts have expressed significant concerns that have yet to be properly addressed and that until such experts are reasonably satisfied appropriate controls are in place there is likely to be major resistance to the PCEHR proposal from such sections of the community.
An example of the sort of issue that has been rather ‘swept under the carpet’ in the ConOps are the arrangements to ensure that, with the PCEHR accessible over the Internet, that it is possible to definitively identify the consumer who is accessing their PCEHR, and that access is not being achieved by another, possibly malevolent citizen here or overseas via identity theft or the like.
NEHTA simply admits they have not worked out how this is to be managed and so have no idea of the potential cost and effort involved - which may be very substantial indeed.
10. Clear Medico Political Rejection of The Present PCEHR Plans.
The following recent article from Computerworld - and many other similar remarks from both the key GP representative organisations make it clear they are not at all satisfied with the present approaches and plans. If these key stakeholders are anything less than very enthusiastic the likelihood of success with the PCEHR program is essentially zero.
Budget 2011: E-health communication trumps spending
Peak health groups have called for greater focus on standards, rather than spending, for effective e-health implementationg
- 10 May, 2011 11:54
Australia’s peak health industry bodies have warned of the Federal Government’s e-health solutions becoming “siloed” without greater attention to standards surrounding implementation of technology for doctors and practitioners.
Both the Australian Medical Association (AMA) and the Royal Australian College of General Practitioners (RACGP) expect there to be little in the way of further funding for e-health initiatives in Tuesday’s federal budget, following the government’s $467 million pour in to personally controlled electronic health records (PCEHR) last year. The government has also committed nearly $400 million to subsidising telehealth services from 1 July next year.
Any health funding announced by federal treasurer, Wayne Swan, is expected to be put toward mental health schemes.
However, AMA federal vice president, Dr. Steve Hambleton, told Computerworld Australia that even without additional funding, the industry required a greater, whole-of-sector approach to the looming initiatives.
“E-health has grown up in isolation, we’ve got to start talking about protocols we can communicate to each other nationally,” he said. “NEHTA [National E-Health Transition Authority] is trying to do that, but hospitals have different software in each state and only recently have we started getting a single unique healthcare identifier.
“GP [general practioner] software, which we’re all going to rely on ultimately to communicate, is all different and the way GPs use the same software is different so standards are really important otherwise we can’t get up and running.”
E-consultations with GPs were particularly important, as they required standardised software and hardware at both ends.
Royal College of General Practitioners (RACGP) e-health spokesperson, Dr. Nathan Pinskier, said standards were also required for implementation, change and adoption of the technology required. He warned a lack of protocols could ultimately silo e-health outcomes.
“Medicare Australia for example struggled to roll out its initiatives for a number of years until it adopted a more broad focus on a whole sector approach,” he said.
For the PCEHR program to have utility it must be embedded into existing software programs, Pinskier said, even once technical requirements have been locked down.
“If it requires practitioners to log out of one system and into another and then copy and paste information or transcribe information it’s not going to fly, if it’s embedded into existing technology so it’s one push at the end of a consultation subject to the patient consent we’re much more likely to have uptake.”
The full article is here:
I had planned to address the specific areas that NEHTA’s ConOps document suggested needed further review but after working through the ten points above there did not seem to be a great deal left to say.
The PCEHR proposal needs an insightful and pragmatic review and major revision to address the issues raised above. If this is not done the outcome is likely to be very bad indeed.