Consumers forgotten in setting health standards

electronic health records

In some circumstances, there may be a dominant player that can set standards and force everyone else to follow them. Customs, for example, forced change in the import and export sectors 20 years ago to its own benefit, as well as the considerable benefit of others.

That option won’t work in healthcare, which is the most complex of all sectors.

It comprises very large, large, medium, small and micro organisations — and many of each size.

These thousands of organisations have highly varied backgrounds and orientations.

They have varying business models, from government, through semi-government to government-funded, to very much private sector.

At any given time they are all at different stages of the investment cycle, so some are ready to make a change to their systems right now, some soon, and many not for several years to come.

For standards to work, there must be trusted institutions (committees and working groups), governance features (especially effective representation of all parties) and credible processes (transparency, published submissions, meetings that everyone can attend with carefully kept records and minutes.

To get buy-in from all players, each needs to be able to see that they will benefit, and that they will not incur unwarranted cost or risk.

The drafts need to be negotiated, and time is essential to allow people to think things through. It takes years, because it has to.

The federal Health Department ran the HealthConnect project from 2001 to 2005, but it failed to establish institutions and processes, and very little progress was achieved with standards and protocols.

HealthConnect also suffered from being a commonwealth-only project.

When the National e-Health Transition Authority was formed in 2006, the most critical contribution it could have made was to make good HealthConnect’s shortfalls — that is, establish institutions and processes and ensure the emergence of standards and protocols through credible, widely representative forums.

Instead, NEHTA went for glory, and tried to develop “a great big database in the sky”.

In doing so it locked out the clinicians, and even more so the consumers whose data was to be trafficked by the scheme.

After the departure of NEHTA’s first chief executive, the clinicians were belatedly invited into the fold.

But, even now, consumers must be satisfied with a bit part, and their representatives are not permitted to participate in setting agendas, find their submissions ignored, and have to start afresh each time a new part of the initiative begins.

A standards process was finally commenced, many years late, using an established industry organisation as the host.

Standards Australia is massively deficient in its capacity to get effective consumer input, but it does at least have considerable advantage and experience in herding business and government interest groups into meetings, negotiations and votes.

But now the “industry standards” model has been found to be too slow, and unable to make up for the decade lost by HealthConnect and NEHTA incompetence, and it’s to be replaced by bureaucrat-driven ad-hockery.

NEHTA is proposing to create small “tiger teams” to “jumpstart” the process of developing specifications.

The teams will include representatives from industry, organisations involved in setting up the personally controlled e-health record lead sites and members of Standards Australia’s IT-014 e-health standards committees.

So, consumers miss out again! Without consumer interests and needs in the driving seat, any e-health scheme will fit patients’ needs badly, and security disasters are inevitable.

Lack of trust will lead people to avoid disclosing embarrassing or dangerous information to health carers for fear their data will be abused.

People suffering chronic conditions are having to wait “patiently” for governments and industry players to get their act together and constructively use technology to improve healthcare.

Dr Clarke is an e-business consultant, visiting professor at the University of NSW’s Cyberspace Law and Policy Centre and visiting professor in Computer Science at the Australian National University Roger.Clarke@xamax.com.au

First published in the Australia 11 October 2011

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