Progress in e-Health – Blocked by Government Secrecy?

The Australian College Health Informatics (ACHI) is to have the CEO of NEHTA (Dr Ian Reinecke) as the Guest Speaker at its AGM in August 2006. As part of preparing for this speech ACHI members have been asked to consider what would be useful questions to put to our guest.

In reflecting on this, and wishing not to be too repetitive in addressing issues that have already been raised in an ACHI e-Health Strategy paper from late last year (which is available here from the ACHI web site www.achi.org.au), I wondered what else could be usefully explored.

The comments of another ACHI member provoked me to think about what else was needed to have the e-Health Agenda move forward. It struck me that there have been all sorts of e-Health initiatives over the last few years – both under the HealthConnect or NEHTA banners of initiated by the different States but that we know very little about the outcomes and contributions of much of this work.

HealthConnect is an interesting case study in point. While this project produced a range of strategy and research documents – some of which are still very worthwhile and useful – it also conducted a number of trials. These included Mediconnect and the following:

“HealthConnect trials have been operating in Tasmania and the Northern Territory since 2002. In 2003 another trial commenced in North Queensland, and in 2005 more trials will begin in New South Wales and South Brisbane.

The Tasmanian HealthConnect Trial took place in southern Tasmania and focussed on adults with diabetes. The Trial ended on 30 November 2004.

The Northern Territory HealthConnect Trial is taking place in the Katherine region and focuses on Indigenous health issues associated with a mobile population in a rural and remote area.

The North Queensland HealthConnect Trial is based in the Townsville region and focuses on people undergoing elective surgery at The Townsville Hospital, many of whom travel long distances to attend the hospital for surgery.

The Brisbane Southside HealthConnect Trial will test particular design architecture for HealthConnect and will focus on adults with diabetes.

The New South Wales HealthConnect Trial involves two separate pilot projects. One pilot will involve children in Greater Western Sydney, the other focuses on adults with chronic disease in the Hunter Valley region on the NSW Central Coast.”

Given all these were publicly funded, and indeed there were many publicly funded evaluations undertaken, one wonders what has been delivered in terms of learning and feedback to the Health Informatics Community.

The answer is not much we have been told about! And, as a colleague has pointed out, we all learn more from our failures than our successes (Thanks Terry).

MediConnect is the only initiative which appears to have had a substantial evaluation report published. This report, indeed, found so many problems and issues with the so called Field Trial that the initiative was cancelled and rather than moving to national implementation was folded into HealthConnect.

As for HealthConnect itself a single evaluation report has been produced. This covers the following”

“The two years of field testing MediConnect and trialling HealthConnect have provided many lessons to inform and guide the national implementation of HealthConnect. These lessons are derived from the extensive evaluation activity, the experience of trial management committees and teams in each of the trials and the Field Test and related research activity. As part of the formative approach to informing trial management, around 30 independent evaluation reports (many unpublished interim or specific issue reports) have been produced. The lessons learned documented in these reports are brought together in this overarching ‘Lessons Learned Report.”

None of these 30 individual reports on HealthConnect have been made public despite the very substantial investment of public money that has gone into them. One really wonders why? One can only assume that there is so much that was done badly, wrongly or technically poorly or that so little was achieved that these are too embarrassing to release. If not, what’s the secret? The downside is, of course that as no one know what went badly – the same mistakes are liable to be repeated.

One thing is for sure, no clinical outcome benefits were identified from any of the reported trials – such a heading did not even get a mention in the Report - and the most significant outcome of virtually all the trials is that they have either been cancelled or dramatically scaled back in utility and complexity.

Move forward to the present and we seem to have the same secrecy and media management instincts operating. NEHTA has commissioned a large range of valuable – and expensive – consulting reports on a wide range of topics including Standards Priorities, Identifiers, Clinical Terminology and Shared Electronic Health Record. Sadly virtually none of these have seen the light of day either.

Even the current Eastern Goldfields Trial looking at the Broadband for Health initiatives has been the subject of detailed evaluation but, yet again, none of the evaluation reports has been made public. For what possible reason could a project providing internet connectivity and services to some scattered health sites be controversial or need to be evaluated in secret. Such projects have happened all over the world.

It is really getting to be a joke. This is work paid for by the public to assist public decision making and the public can’t see, review or critique any of it. Frankly I think it is a scandal.

David.