Data & Digital Futures: MoH View

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Picture: Simon Ross, data governance manager, data and digital, Ministry of Health

Simon Ross, data governance manager, data and digital, Ministry of Health

In this quarterly column from the Ministry of Health’s Data and Digital team, data governance manager Simon Ross explains why a Health Data Strategy is needed to provide guidance on how organisations and people can use data safely and effectively and get more value from it.

Good use of data is a fundamental building block to making our health system a smarter system.

It can help us understand and address the wider determinants of health and improve the quality and effectiveness of health services.

But it only helps if, in addition to collecting the data, you know you’re making good use of it by making it available to the right people at the right time and ensuring those people have the right tools to be able to use it.

Technologies for processing data have come a long way in recent years. There is more data being generated now than ever, and examples from a range of spheres show how data is being used to make improvements. Industries from transport to media and retail are being transformed by data and digital, and health and healthcare will be no exception.

However, raw data on its own is not always useful so we need to work together as a sector – across government and with health consumers – on how to turn it into useful information.

The Ministry of Health sees the need for a Health Data Strategy to provide guidance to the health sector and beyond, looking at how organisations and people can use data safely and effectively and get more value from it. The strategy would assist organisations to work together and with the Ministry of Health to focus on addressing common problems and creating collective value.

A data strategy

The Ministry has recently started work on the strategy, looking at the many guiding documents in this space.

Recent work done by the Social Investment Agency around what Kiwis expect when it comes to their data is the Data Protection and Use Policy, which has five principles and four guidelines for how organisations should work when it comes to data.

Government policy, the New Zealand Health Strategy and the Health and Disability System Review will also inform what a Health Data Strategy should look like.

We are near the beginning of this process, synthesising information and coming up with a plan to develop a strategy. We will also be going out and talking to people in the health sector and in government in a targeted way.

The process will involve the health sector coming together to agree what is important with data and information and what actions fall out of that. Some of these might sit with the Ministry, while others might sit with organisations or sector groups.

We are looking to release the first iteration of the strategy by middle of this year, which people will have the opportunity to comment on.

The Health Data Strategy will also inform the large programme of work that is the proposed national Health Information Platform.

Data collection

We know that some of the processes for data collection that exist at the moment are work intensive for clinicians and health organisations, so we have to address that.

One question we will be seeking to answer is how much to rely on a federated data model and bring data together only for specific purposes and 'just in time, or whether to operate regional and national centralised collection of data for policy, planning, research and analytical purposes.

That might be a live feed into a clinical consultation that presents information about the patient in front of them. Or it might be bringing data together either for research or analytical purposes, which would be information about a lot of people.

Data also needs to be a two-way street, so we need organisations and people to see the benefits from the data they provide. This is a significant finding of the Social Investment Agency’s public consultation to develop the Data Protection and Use Policy – individuals and organisations from whom data is collected must see the value from that data collection flow back to them.

Getting value from data

The Ministry already supplies data back to the sector in various forms or publishes it on our website, but there's always more we can do. There are questions to be answered about whether the products we are producing and reports we have been producing for a long time are the right products. 

The Ministry is in the early days of using the Qlik Sense platform to reflect data back to the sector.

A number of apps have been and are being developed that present data in a more dynamic way, visualising it for people and allowing them to interrogate it in order to get value from it. These include an app on mental health and addiction and one on immunisation coverage. The more people use these and other new apps, the more value they will get.

This data is still not yet available in real time and there are a number of existing processes that prevent that, but data collections made through programmes like the proposed nHIP will move us closer to being able to collect and provide access to real-time data.

Protecting and using data

We want to get more value from data while at the same time protecting sensitive information. There’s always a balance to be struck and we need to work together to solve common problems. 

Due to obligations on people when it comes to privacy there can be a strong desire to hold information closely and not share it due to fear of making a mistake. 

It can be easy for people to see the consequences of breaching privacy and therefore choosing not to share information, but it is often quite difficult for people to see the consequences of information not being available to someone who needed it to make a decision. It can have real and serious consequences for patient safety when critical information is not available, leading to adverse outcomes.

I am a strong proponent of safe data sharing, ensuring the right people have access to the right data at the right time, and I believe we need to do more to make it easier for people to share data safely. 

We need to put the focus first on sharing for individual and public benefit and, in that context, on good data protection, because we don’t want to be focused on protecting the data to the extent that we refuse to share when it would be beneficial to do so.

Valuing and respecting Māori data

There is increasing recognition around the world of the rights and interests of indigenous people in relation to data.

In the New Zealand context, there are questions about governance and sovereignty relating to Māori data. Responsibilities of the Crown under Te Tiriti o Waitangi extend to data. The Ministry is seeking expert advice on what te ao Māori and tikanga principles mean for how we respect, value and use data about Māori.

Simon Ross is the data governance manager, data and digital, Ministry of Health.

If you want to contact eHealthNews.nz regarding this View, please email the editor Rebecca McBeth.

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