NE Topic 3: Making better use of existing data

Discussions
1

@gill and @karenblake are leading this topic.

In relation to this topic - I had in mind aspects of data use as accessibility, defining which data is meaningful, not collecting data for data’s sake, reporting outcomes based on key factors within the data-set, turning data into continuous improvements.

  • there is a lot of data out there

  • how do we evolve national data governance and sharing, how can we leverage off existing data

  • who owns the data? ownership of data needs to be defined

  • Saxon Conor - through the lens of a 2nd care clinician seeing a lack of data reuse, there doesn’t appear to be a bigger view of what data should be captured, FHiR standards used inconsistently. Do we have the social licence to do that, not sure that we can do this as a commercial

  • Need to identify who has the data, public, private, primary, secondary

  • Greig Russell - Midcentral just starting to do an audit re clinical systems and data. Issues with gaining permission to share data between primary and secondary care. ? is privacy being used as a reason for data not being shared. Too much use of anecdotal data and not using robust research. Need to use data to promote equity in health.

  • Karen Blake: Personal data being collected, do we want access to some of this e.g for cardiac patients the ability to see monitoring information. How do we support patients to view their own clinical information?

  • Francois: benefits of algorithims running across datasets e.g. search for markers related to Diabetes. Issues with vendors not knowing their own products.

  • Saxon: how many vendors have the ability to view data across a number of data sources

  • Requirements for a health data dictionary in NZ.

  • Issue with collaboration between vendors, not sharing information

  • Saxon: ? make it mandatory for vendors to prepopulate fields from other vendor systems

  • Importance of MoH taking a lead in defining health terminology, health codesets, data linkages and establish data governance

  • Need for definition of what is an admission, how do we display age, issues with FCT and differing definitions

  • Karen Blake: how do we de identify data so that it can be used for health insights. Who needs to own this process

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Topics to discuss at CiLN meeting - chosen!
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https://ehealthforum.nz/t/ne-topic-3-making-better-use-of-existing-data/9019

This discussion seemed to become about data governance. I feel obliged, therefore, to mention data soverignty and advocate that we all find 30 - 60mins to watch this and consider our obligations under Te Tiriti :wink: https://www.youtube.com/watch?v=xbrAZEdqY1g&feature=youtu.be That webinar is from the resource: https://www.waikato.ac.nz/rangahau/video-hub

Thanks for considering sharing :wink:

Disclaimer: I know that we will only achieve the goal of health equity through Kaupapa Maori leadership, where service models can be adapted as necessary for non-indigenous people, rather than expect that adjusted western models can be ‘fit for purpose’ for Maori. Thus, I identify as a non-indigenous who aims to partner and support Kaupapa Maori (KM), and recognizes I have no leadership role in this process.