My View: Time for patient power

eHealthNews.nz: Digital Patient

Wednesday, 28 September 2022

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VIEW - Ernie Newman Convenor of the TUANZ Digital Health Consumer Advocacy Group

Ernie Newman When the structure of an industry is failing to meet the needs of the community, it is time for the government to step in. And if the government fails, then it's time for the ultimate customers – the public – to stamp our feet. That’s the point our health system has reached in relation to use of IT.

IT underpins every facet of modern society. No sector can be more efficient than its underlying IT infrastructure. Most sectors have got it right.

The health system
Health? Not so. Misdirected and inadequate investment, absence of a whole-of-system approach, eternal band-aiding, and weak political leadership for a decade or more have left an antiquated, fragmented IT infrastructure totally unfit for purpose. That has now brought the entire health system down with it.

Meanwhile, medical advances have delivered enormous new opportunities to give people longer. healthier lives. But with those opportunities come heightened community expectations.

If IT in health had kept pace with that in banking, education, travel, government services and the like, it would be key to delivering efficiencies that offset some of that cost. Much more efficient use of clinical resources, and most especially greater patient self-management enabled by information, could be expected.

But health IT has failed to deliver. True leadership has been missing at crucial moments.

In 2009 the government of the day promised ubiquitous “patient portals” with our complete health history centralised and accessible to every New Zealander by 2014. It failed to materialise.

Some of us have a partial portal – I can get my test results online but only at the GP level, and I used to be able to make an appointment online until this service was withdrawn “due to Covid”. But I can't get my hospital discharges or my GP’s clinical notes. Even my changed address details don’t move around across the system.

The kind of information “one stop shop” we have taken for granted from banks airlines, and government agencies for decades remains elusive in health and there seems to be no plan to achieve it.

Challenges
There are features of the health system that make IT challenging. The convoluted web of interlocking private and public sector services; patient privacy; ownership of IP; ultra-complex payment structures; and endemic under-funding are among them.

Yet there are solutions to all these, and similar challenges have been addressed in other sectors.

There are of course, positives. We have some world class specialist vendors of health IT in New Zealand, many of them globally famous but languishing at home because dealing with our health system is too hard.

But on the downside we have a track record of inertia. I feel for the long-serving people in the sector – decades of anticipation followed by unfulfilled promises have led to a sense of hopelessness. Nowadays each time a politician announces a new goal, or intention to define a goal, you can almost hear their collective groan. They’ve seen it all before. They’ve become resigned to non-delivery.

Consumer advocacy
That’s why the Tech Users Association – TUANZ – has stepped in by launching a new Digital Health Consumer Advocacy Group. It’s completely independent from government, guided by a dozen interested individuals from within the broad TUANZ constituency.

They are customers on the demand side of the health system – not clinicians, IT specialists or other vested interests on the supply side.

Our Group will work actively with the sector. We have already forged links with several key influencers and groups. When officials, Ministers or clinicians pour cold water we will challenge them. We will increase public awareness of the lost opportunities and the solutions. We will be collaborative but outspoken.

We’ll ask questions – as one of our youngish members who’s spent a lot of time around hospitals said recently – “every time I go near a hospital I come away with a new list of obvious inefficiencies.” Customers have a valid perspective to contribute.

Our health IT system cannot be allowed to go around in unproductive circles for a moment longer. Consumer power must be introduced to the mix. We look forward to constructive engagement.

Ernie Newman is Convenor of the TUANZ Digital Health Consumer Advocacy Group. As a consultant over the past decade he has worked with the National Health IT Board, Ministry of Health, several District Health Boards, the Samoa National Health Service, and other related bodies. Prior to all of that he spent 12 years as CEO of TUANZ.