Draft : The Person-Controlled Electronic Health Record (PCEHR) - A Uniquely Australian Approach to E-Health.

(For a Health Magazine - Comments Welcome)

In late 2008 Australian Health Ministers endorsed a National E-Health Strategy for Australia which had been developed for the Australian Health Minister’s Advisory Council by Deloittes. At its very simplest this Strategy said Australia needed to continue working on the nation’s e-Health infrastructure (secure clinical messaging, identifiers and terminologies) while investing in improving the quality and penetration of computer systems being used by healthcare providers. With this well underway it was suggested it would then be the time to start to promote health information sharing between the various actors in the health system (hospitals, practitioners, service providers etc.) to facilitate improvements in the quality, safety and efficiency of care. The Strategy also suggested that progress was required in the way E-Health initiatives were planned, managed and governed.

The endorsement of the National Strategy was not associated with any additional budgetary funding, so essentially Government felt this was a good idea but that they were not going to fund implementation. That was apparently left to the Health System.

In June 2009 the National Health and Hospitals Reform Commission (NHHRC) delivered their final report to Government. In this report (see Executive Summary Page 14) they said what was needed was a PCEHR. In their view the introduction “The introduction of a person-controlled electronic health record for each Australian is one of the most important systemic opportunities to improve the quality and safety of health care, reduce waste and inefficiency, and improve continuity and health outcomes for patients. Giving people better access to their own health information through a person-controlled electronic health record is also essential to promoting consumer participation, and supporting self-management and informed decision-making.”

Amusingly some wags have taken to calling the PCEHR the ‘politically correct’ EHR in recognition of the apparently political rather than clinical agenda the proposal seems to be advancing.

The other key recommendation in the E-Health domain the NHHRC but thus:

“We are also recommending that clinicians and health care providers are supported to ‘get out of paper’ and adopt electronic information storage, exchange and decision support software. The Commonwealth Government must set open technical standards which can be met by the vendor industry while ensuring the confidentiality and security of patient information. Most importantly, we urge governments to expedite agreement on a strengthened national leadership structure for implementing a National Action Plan on E-health, with defined actions to be achieved by specified dates.”

The first of these recommendations led to the Commonwealth Health Department announcing a near half billion package in the most recent (2010) Budget with the promise that anyone who wanted a PCEHR would be able to register for it by July 2012 - now just 16 months away. It needs to be noted that the National Action Plan on E-Health has never appeared and that support to have clinicians ‘get out of paper’ has also not been forthcoming.

Do date (as of the time of writing in early February 2011) no significant details on how the PCEHR is to actually work have been released.

From a range of sources the following draft overview of the PCEHR has been assembled.

“The PCEHR system will consist of a range of PCEHR-conformant repositories operated at the national and regional level by a mix of public and private organisations. The PCEHR system capability will transition over time to provide access to richer clinical data stored in a range of PCEHR-conformant repositories.

The PCEHR system will consist of:

• A nationally operated repository, designed to provide a distributed set of secure highly available repositories for PCEHR records on a national basis.

This PCEHR-conformant repository will be used to ensure that there is a minimum level of health information available nationally and to support the sharing of critical health information when there is no other suitable repository available locally. It is likely that the national repository will be used to store health summaries and discharge summaries.

• Other PCEHR-conformant repositories will be accessible over time. These repositories will typically be multi-purpose repositories that may have been designed for other purposes and now include new features to allow it to become conformant with the PCEHR system. Potential candidates include, but are not limited to:

– state, territory and regionally operated SEHRs (e.g. NT SEHR, NSW SEHR);

– Medicare Australia operated repository (e.g. for ACIR and Organ Donor Information);

– privately operated diagnostic services (e.g. repositories operated for/by Pathology and Diagnostic imaging companies);

– other sources including Australian Childhood immunisation register (ACIR), Adverse Drug Event Reporting (ADRAC), implant registers, cancer registries, breast screen registries, etc; and

– commercially operated PHRs (although this is subject to further policy review).”

It seems it is planned that once ‘persons’ have voluntarily registered for their PCEHR that they will be provided with access to some sort of internet portal where they, and those they authorise, can review the information held in the PCEHR system repositories.

There are a very large number of unanswered questions around what is now a project that has had so large an amount of resources dedicated to it. These include:

1. Where are the health summaries and discharge summaries to populate the repositories going to be sourced from, and why would the current information custodians make this information available to Government?

2. Who will be accountable - and presumably paid - for keeping them current even after they have been uploaded to the repositories?

3. Who will be responsible and accountable for errors in the summaries?

4. How will other non-government entities be paid for their time and trouble to populate the proposed repositories?

5. Who will fund the update of all the affected systems, given the lack of financial support to clinicians and their software providers so far?

6. Who will train and support all the new e-Health users?

7. What happens if your GP, or other provider, does not want to share his records with the Government?

8. More important has anyone actually thought about any of this, and why is the public in the dark about just what is happening?

It is vital readers be aware of two facts.

First a system of the sort proposed has never been implemented anywhere in the world without the underpinning of a fully developed provider EHR infrastructure which the Government seems to think will appear out of thin air when it is ready to collect information for its PCEHR system. It does not exist at present.

Second there is no evidence base supporting the value and impact of the PCEHR system as it is presently proposed as far as I can find. The whole proposal also lacks a public benefits case, a public implementation plan and indeed any public review or discussion.

Bluntly I believe the plan for the PCEHR is a major strategic misstep on the part of the Government where essentially the cart (the PCEHR) is being put before the horse (clinician automation and information sharing).

I confidently predict major changes to the proposal before anything sees the light of day in mid 2012, in the unlikely event that anything useful is delivered in that time-frame.

Sadly this whole proposal feels to me like a slow moving train wreck that is going to cost us all a lot of money.

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David.