CIO Interview: Reform an opportunity to rethink health data
Monday, 7 June 2021
VIEW - Alex Poor, Chief Data Officer, Pinnacle Ventures  Working with health data, I often hear conversations about the need to integrate data, share data and provision it to those who need it most. I’m sure the vast majority of people working in this space feel passionately about doing that safely and securely. But we get bogged down in weighty conversations about standards, the quality of source data, and anxiety about patient privacy.
The fact is, we could all be sharing all the data right now – if we really wanted to. There is no meaningful single technical barrier. But there are lots of smaller hurdles and obstacles that can often make it seem too difficult. A couple of incidents from some years ago have stuck in my mind.
Problems and solutions
The first was at a major tertiary hospital, where we needed to access radiology data for a new reporting requirement. All the data for this system was stored off-site, and not only did we have to ask the vendor very nicely if we could access our patient data, we also had to pay them for it.
The second incident, at a different tertiary hospital, led me to discover that a critical data set required for some new compliance reporting was only available in a Microsoft Access database that had been made by a consultant in that specialty. The same consultant licensed this ‘system’ to the DHB (at a cost), but more importantly, didn’t want us going anywhere near ‘their’ data.
So why am I telling you this? I’m trying to highlight a couple of key problems, as I see it. The first is to do with procurement. The vendor landscape in New Zealand is relatively small, and it is vital that we have effective competition across all core product areas. More importantly though, is the need to ensure we only do business with vendors that align with our digital values. There absolutely has to be a baseline expectation that any digital health product will:
- offer full access to its data store via an API, and
- utilise agreed standards such as SNOMED-CT and FHIR.
It is great to see the Ministry of Health receive funding in Budget 2021 for the national Health Information Platform (nHIP), this is a much-needed step forward for digital health in New Zealand that will reinforce these expectations. Changes to procurement were also a key part of NZHIT’s excellent report Hauora, Mauri Ora: Enabling a Healthier Aotearoa New Zealand, and they should be commended for raising the profile of this area which, although rather dry and administrative, has such a huge impact on delivery.
Decentralising data
The second key issue, as I see it, is data centralisation. This is a venerable model which has worked well for many years; it’s safe and reassuring for IT people to work with. But my experience has been that this breeds not just a data silo, but philosophical and cultural silos as well. It infers ownership and embeds an imbalance of power in ownership and usage of data.
As a patient (and let’s not forget that we are all patients and/or caregivers at some point), the only part of my own health information I routinely have access to is that offered by the two major primary care PMS vendors. Despite this, I have no way of knowing who has accessed my health data, and how it has been utilised or interpreted.
This is especially problematic for Māori, and Ian Pool’s fascinating chapter in Indigenous Data Sovereignty: Toward an Agenda (ANU Press, 2016) states in no uncertain terms how the imposition of Western models and traditions around demography and data management has sidelined indigenous ones, and ultimately harmed Māori.
We need only look at the many news stories showing clear examples of racist, sexist or trans-exclusive artificial intelligence, to understand that social and cultural perspective is critical in understanding and using data responsibly. And how can we have a good grasp of this when so many still don’t understand how the Population Based Funding Formula works?!
Data centralisation has been the only viable option, for many years. But not anymore. There is real momentum behind the growth of decentralised technologies now (look at matrix.org, manyver.se or ipfs.io for some examples), and there is growing social momentum behind the opportunities they offer.
Patient controlled data
Recently Johan Van Schalkwyk noted, “It’s very easy to mouth the words ‘patient centric’ ... but actually quite difficult to articulate design”, and Will Reedy lamented, “In early 2021 ... we are yet to make significant progress to empower New Zealanders by providing more access and control to their own health information or through tools such as consumer held records”. The current health sector reforms encourage us to ask whether we are going far enough, and to take a look at new technology which can address these concerns and drive meaningful change.
Wouldn’t it be wonderful if the health sector reforms envisaged a space where we can plan now for a medium-term future of patients owning and controlling their own health data? Not only finally enabling true patient-centred care, but enabling data sovereignty, built-in social licence, the removal of sector liability for information security and privacy breaches, and the sweeping away of all our data silos.
Alex Poor is chief data officer, Pinnacle Ventures, and PhD candidate researching decentralisation of health data at Auckland University of Technology. If you would like to provide feedback on this update, please contact the editor Rebecca McBeth. Read more VIEWS
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