Post 500 = NEHTA’s Individual Electronic Health Records System – A Really Scary Proposal!

As mentioned late last week NEHTA has just released the Privacy Blueprint for the Individual Electronic Health Record.

The document can be found here:

http://www.nehta.gov.au/index.php?option=com_docman&task=cat_view&gid=-1&Itemid=139

In this blog I want to explore the nature of the IEHR proposal. In a later blog I plan to consider the privacy related aspects of this document.

This is covered in pages 4-9 of the document.

The first thing to note is that the IEHR proposal is a slightly elaborated Shared EHR proposal as developed by HealthConnect between 2002 and 2005 – until the sudden defunding in July 2005. To quote a footnote.

“A national approach to an Individual Electronic Health Records system is also referred to as “IEHR” throughout this document. The IEHR was previously known as the Shared Electronic Health Record (SEHR).

Elsewhere it is made clear that the IEHR is to be an IEHR Service (which presumably someone – Government, Medicare Australia, an IEHR Agency or the Private Sector maybe – will provide) and that all those who have an Individual Health Identifier will be able to enrol in the service.

Just as in the HealthConnect Business Architecture Version 1.0 (16/10/2003) there are initial health profiles and event summaries. (So much for dramatic progress over the last 5 years!)

The present plan calls for an IEHR to be made up of:

1. A Summary Health Profile.

The contents of this are planned to be:

• Allergies, Alerts and Adverse Reactions: Known susceptibilities from past history or investigations and other risk factors;

• Current Medications and Ceased Medications: Current and recent treatment regimes as well as medications that may have been ceased. With each medication the indication for prescribing should be recorded and when medications are ceased, the reason for ceasing should also be captured (e.g. an adverse event, the medication wasn’t effective, etc);

• Problems and Diagnosis: Active or persistent disorders as well as covering things that significantly affect the certainty of an asserted finding;

• Family and Social History: Presence or absence of family and social history relevant to the ongoing care of the individual, as provided by the individual;

• Immunisations: An individual’s history of immunisation;

• Implanted Devices: Presence of implanted devices such as pacing wires, joint prostheses and medication implants;

• Screening Results: Findings from screenings undertaken, the last date and outcome of PAP Smears, Mammograms;

• Key Physiological Measurements: Height, Weight, BMI;

• Planned Activities: A description of activities that should be performed. This may include care plans for certain individuals; and
• Procedures: Histories of recent procedures and past procedures that may be relevant to or compromise long term health.

2. Event Summaries

These will be of individual clinical encounters – e.g. an admission, a lab result or whatever.

3. A Supported Self Managed Care Record.

Here the individual can record their observations, comments etc.

Sensibly have a record will be at the discretion of the individual and it will be possible to de-activate a record if desired.

It is also claimed there will be excellent governance and control arrangements to ensure proper consumer protection and privacy etc.

With the exception of point 3 the HealthConnect Business Architecture V1.9 covered most of this is December 2004.

However, even though this NEHTA proposal has been a long time coming (it has been worked on since 2005 to my certain knowledge) we see little that addresses the core problems that are associated with a centralised Shared EHR.

I have explored these in depth in the past here:

http://aushealthit.blogspot.com/2008/04/few-of-wrinkles-of-shared-electronic.html

and here:

http://aushealthit.blogspot.com/2007/12/i-wonder-if-nehta-has-plan-b-or-should.html

and here:

http://aushealthit.blogspot.com/2007/12/nehta-is-planning-ill-conceived-e.html

among others.

We also now learn that at the end of the year (and not early in 2008 as initially suggested) will a business case to develop this IEHR Service be submitted.

What to say? The number of problems with all this are huge! Among the key issues are deciding what information goes and does not go to the shared record, how to cover gaps in the record when a specialist (or a nurse practitioner) does not use an EHR, how to persuade anyone to contribute to the shared record, how to have trustworthy data quality within the record, who owns the shared record and so on.

What I fear will happen will be some unworked through business case proposal will be submitted, enthusiastically adopted by Ministers who do not know better (why do you think anyone who knows about all this has been excluded from recent consultatory meetings?) and the difficulties and complexities that I have been writing about for years will then emerge as they have in the UK Shared Care Record Approach. (The UK have spent billions on their centralised system only to face huge resistance from clinicians and all sorts of issues in getting ‘data fit for sharing’!)

I believe the centralised, shared EHR is a fundamentally flawed architecture. The funds would be better spent upgrading GP and Specialist Clinical Computer Systems and getting clinical messaging working between the health sector actors. Once that is working – as in places like Denmark – then maybe consider some centralised emergency data storages of critical data as a second step.

Remember doing an IEHR of the sort NEHTA are planning will cost billions of dollars – I am not sure there is the stomach for such investment right now – and neither should there be given what could be done with considerably less.

The National E-Health Strategy needs to define a more bottom up locally driven approach to e-Health that will facilitate incremental, progressive transition towards a National Health Information Network and not towards a centralised IEHR. It is by no means clear that this IEHR initiative should be expending a cent until the National E-Health Strategy is finalised and agreed. This whole – very expensive – effort could turn out to be a total waste of time and money. Indeed I think it will!

I look forward to their report in a month or two. Maybe it will put a stop this NEHTA silliness and fondness for the dangerously grand project.

David.

PS:

This is the 500^th Post to the Blog…thanks to all those who read. Please comment as often as possible as this adds vastly to the value of the blog for me and others!

We now have had over 50,000 visits to the site (80,000+ page views) since March 2006!

D.