The potential that health data offers to improve healthcare and equity has been reinforced at two recent events held this month in Aotearoa New Zealand, with local and international experts offering some fascinating insights.

Te Rourou symposium sheds light on democratising data:

Te Rourou Tātaritanga – The Informatics for Social Services and Wellbeing Programme is a data science research project. It aims to develop our national linked data, including the Integrated Data Infrastructure (IDI).

Its recent symposium, ‘Our Data Sources as a Strategic National Asset’ highlighted the strength of the data New Zealand possesses and the research being undertaken here, as well as exploring how data can be made more pervasive and accessible. 

‘Our Data’ brought together experts from around the world, including Aotearoa New Zealand, to share their insights on how to build a data infrastructure that can benefit everyone.  

Keynote speaker Professor Julia Lane, from New York University, shared insights from her book ‘Democratizing our Data’ and provided a “pocket guide” for building data infrastructures. She listed four important steps: create clear value, build researcher/agency partnerships, deliver data products quickly, and create a data community. 

Professor Lane shared examples of how these steps have been implemented, including the LEHD program that connected labour records across US states, and the IRIS program that tracked payments, rather than publications, to evaluate the impact of research diversity.

Fellow keynote speaker Dr Nancy Potok, the former Chief Statistician of the United States, discussed the US Federal Data Strategy and emphasised the importance of leveraging data to create value. She outlined the guiding principles of the Federal Data Strategy, which included promoting transparency, ensuring relevance, harnessing existing data, anticipating future uses, and investing in learning. 

Dr Potok stressed the need for easier access to data, noting common complaints about the time and expense involved in accessing the New Zealand IDI. She shared her experience in the US of mandating a single application portal to streamline the data access approval process.

Additional speakers carried on these themes throughout the symposium, describing specific data initiatives in other overseas contexts.

Harnessing the power of data at Hack Aotearoa: 

The Hack Aotearoa conference showcased the potential of data and digital innovation in achieving equity in healthcare in New Zealand. The event brought together healthcare professionals, researchers, and innovators from different fields to discuss the latest developments in health data management and digital solutions.

Organised by Dr Mataroria Lyndon (Ngāti Hine, Ngāti Whatua, Ngāti Wai, Waikato) and Dr Xaviour Walker, the conference day kicked off with keynotes from Riana Manuel, CEO of Te Aka Whai Ora, and Hon Dr Ayesha Verrall, Minister of Health and Minister of Research, Science, and Innovation, who set the scene for the tasks at hand around making data pervasive.

These were followed by keynotes from Professor Eric Topol from the Scripps Translational Research Institute, and Dr Leo Celi from Massachusetts Institute of Technology (MIT) Critical Data.

Professor Topol spoke about the possibilities of multimodal artificial intelligence (AI) to assist in clinical care, including the possibilities that large language models offer – for example, ChatGPT. He gave examples of how combining many different sources of health information into large scale AI models will provide new benefits to health consumers.

Dr Celi reinforced the need to include those who will be most impacted by AI models in their development. He provided some examples of previous AI models that had been put into production but ultimately caused harm for marginalised groups. His biggest take home message was that “if you aren’t at the table, you’re on the menu.”

Māori data and digital innovation were key themes covered throughout the day, with a session on the topic facilitated by the Ngāti Wai Trust Board. Hon. Dr Shane Reti, National Party health spokesperson, outlined the regulatory landscape for AI and discussed Australia’s self-regulation approach and guidelines.

Cushla Currie, CEO of the Medical Technology Association, spoke to the human side of data, illustrated with examples of Māori treatment by the healthcare system.  

Morris Pita, CEO of Taipari Mohio Emergency Q, shared moving examples of Emergency Q’s impact and how the system has changed the behaviour of people who are less served by stretched healthcare services, such as the emergency departments at hospitals. 

Hineamaru Lyndon, who works with Te Whatu Ora on the national immunisation programme and on data sharing agreements, discussed the safe sharing of data. His discussion was focused on weighing up Te Tiriti obligations alongside privacy considerations and the legal mandate to share.

Dr Kelly Atkinson of Precision Driven Health says the events demonstrated progress towards improving health outcomes and reducing health inequities through community involvement, diversity, and inclusivity – as well as the need for more work to be done.

“The ‘Our Data’ symposium highlighted that Aotearoa New Zealand is further ahead in the level of data and research we’re conducting than many other countries, showing that we have a strong base to work from.”  

“The Hack Aotearoa conference highlighted the power of data and digital innovation to achieve equity in healthcare and the need for collaboration and investment to create a more equitable and innovative healthcare system in New Zealand.”

“The events demonstrated the importance of health data, and showed that while we have made good progress, there is still more work to do to harness the power of data to improve healthcare and equity in New Zealand, and abroad.”