Submission to National Health and Hospitals Commission
Dr David G. More
7th May, 2009
The NHHRC issued a press release entitled “NHHRC Backs Person-controlled Electronic Health Records” on 30 April, 2009.
This may be accessed here:
In summary the report made 7 recommendations which were summarised as follows:
“The Commission has made seven recommendations to make person-controlled electronic health records a reality. These include:
- By 2012, every Australian should be able to have a personal electronic health record that will at all times be owned and controlled by that person;
- The Commonwealth Government must legislate to ensure the privacy of a person’s electronic health data, while enabling secure access to the data by the person’s authorised health providers;
- The Commonwealth Government must introduce unique personal identifiers for health care by 1 July 2010;
- The Commonwealth Government must develop and implement an appropriate national social marketing strategy to inform consumers and health professionals about the significant benefits and safeguards of the proposed e-health approach; and
- The Commonwealth Government must mandate that the payment of public and private benefits for all health and aged care services be dependent upon the provision of data to patients, their authorised carers, and their authorised health providers, in a format that can be integrated into a personal electronic health record.”
Qualifications to Provide Comment:
I am a consultant in the e-Health domain and have been so for over 20 years. I have provided professional advice for both public and private sector organisations including DoHA, NEHTA, SA Health, NSW Health (where I acted as CIO for a period), IBM, Ramsay Healthcare etc.
My qualifications include medical and science degrees, a PhD in Medicine, 2 clinical fellowships in Anaesthesia and Intensive Care and a Fellowship of the Australian College of Health Informatics.
I have the four major criticisms of the document as it was released.
First the evidence base on which is supports the deployment of the Person-Controlled Electronic Health Record (PEHR) has been assembled in what can only be termed a fraudulent and deceptive fashion. For reasons best known to the authors of the paper evidence for the use , by healthcare providers, of electronic health records (EHRs) has been appropriated and it is claimed this evidence supports the adoption of PEHRs which is simply does not.
To date I am not aware of any major studies validating the value of PEHRs (or PHRs as the rest of the world describes these records).
Indeed a major review published as late as December 2008 stated the following.
“We spend nearly $2 trillion annually in healthcare in the US with a high cost per person and an unacceptable variability in the quality of care. It is clear that PHRs have the potential, if designed appropriately and adopted widely, to reduce costs and simultaneously improve quality and safety of care. This potential has led to enormous public enthusiasm for PHRs and large investment. However, the existing knowledge base that underpins this work is surprisingly limited and most of the fundamental issues remain unresolved. For PHRs to realize their future potential, additional research is essential, but it is unlikely to be performed unless substantial additional financial support is committed to PHR research and evaluation, especially from federal and commercial sources. If these additional investments are not made, much time and money may be wasted and the potential value of PHRs will remain unrealized.”
See the following for the full article.
Similar sentiments are expressed here in a slightly earlier paper when discussing benefits:
“Benefits of Personal Health Records
For consumers, PHRs have a wide variety of potential benefits. One of the most important PHR benefits is greater patient access to a wide array of credible health information, data, and knowledge. Patients can leverage that access to improve their health and manage their diseases. Such information can be highly customized to make PHRs more useful. Patients with chronic illnesses will be able to track their diseases in conjunction with their providers, promoting earlier interventions when they encounter a deviation or problem. Collaborative disease tracking has the potential to lower communication barriers between patients and caregivers. Improved communication will make it easier for patients and caregivers to ask questions, to set up appointments, to request refills and referrals, and to report problems. For example, communication barriers are responsible for many adverse drug events in the outpatient setting.11 In addition, PHRs should make it easier for caregivers (proxies for the patients) to care for patients, which is difficult today. A critical benefit of PHRs is that they provide an ongoing connection between patient and physician, which changes encounters from episodic to continuous, thus substantially shortening the time to address problems that may arise.
To date, there is limited evidence supporting these hypothetical benefits; however, many consumers have high satisfaction levels with existing early versions of PHRs.3,7,12,13 In particular, consumers place value on easy access to test results and better communication with clinicians.
The PHR can benefit clinicians in many ways. First, patients entering data into their health records can elect to submit the data into their clinicians' EHRs. Having more data helps clinicians to make better decisions. The PHR may also become a conduit for improved sharing of medical records. Patients who are more engaged in their health are more active participants in the therapeutic alliance, for example, when patients with chronic conditions collaboratively manage their illnesses with clinicians to reduce pain, improve functional outcomes, and improve medication adherence. Finally, asynchronous, PHR-mediated electronic communication between patients and members of their health care teams can free clinicians from the limitations of telephone and face-to-face communication or improve the efficiency of such personal contacts. Notably, all the advantages of PHRs for providers depend on the PHR being integrated with the provider's EHR.
Potential benefits of PHRs to payers and purchasers of health care include lower chronic disease management costs, lower medication costs, and lower wellness program costs, although none of these has been well studied. The greatest area of benefit relates to the chronic disease management, where costs are typically high.14”
Full paper here:
Note there is “limited evidence supporting these hypothetical benefits”.
On the other hand there are many studies identifying the benefits of provider used EHRs. This evidence can be best accessed at the Health IT page of the US Agency for Health Care Research and Quality. See here:
There seems little point in rehearsing this information again in this short submission
My second criticism is that by having the NHHRC publish this apparent plan – the fuller scope and much more fully thought out National E-Health Strategy developed by Deloittes for AHMAC – is very likely to be sidelined and not supported for implementation. The NHHRC document does not address a legion of issues regarding the development of e-Health in Australia and its support of Health Reform and this is a deeply concerning. At best the NHHRC document should be seen as being adjunctive to the work undertaken by Deloittes and Booz and Co on behalf of the NHHRC.
My third criticism is that even if the recommendations found on pages two and three of the PEHR document were to be implemented, and this seems to be highly unlikely, the document totally fails to address provider costs and compliance as well as overarching national e-Health governance. The benefits for the cost, sustainabilty and quality and health care in Australia would be dramatically less than that which may be achieved by implementation of the Deloittes plan.
Lastly I am deeply suspicious of the NHHRC motives in the formulation of this proposal. On page 11 we read “While we support this overall vision for e-health, we have long debated the most cost-effective means of enabling and encouraging the development of personal electronic health records.” I take this to be inferring that the NHHRC has cast around for a low cost way of seeming to be doing something in e-Health, has ignored the need to provide provider e-Health solutions and is hoping that by offering a voluntary PHR that the issue will go away – as the PHR will be made available cost free, or at low cost, by the likes of Microsoft or Google.
Let me be quite clear – a PEHR does not in any way replace the need for provider systems and networks and to think this proposal provides reform enabling e-Health for the NHHRC and the country is just utterly fanciful.
There are two things I also need to make it clear. First I am totally convinced of the necessity of an appropriate, funded e-Health plan as part of the overall NHHRC final report. Second I need to disclose I was an unpaid advisor to the consulting team who developed the Deloittes plan and that I have also made unpaid contributions to the work undertaken by Booz and Co.
It is my belief the NHHRC should issue a clarifying press release placing this document in its proper context as a discussion document for PHR directions in the overall context of the Deloittes National E-Health Strategy. The NHHRC then needs to say that it endorses the Deloittes work fully or explain how it will actually develop an implementable replacement that fully addresses the e-Health needs of all the stakeholders in the Australian Health System.