Patient perspectives on the use of their health information

Discussions
1

Hi all
Just letting you know about our paper just published in the NZMJ on what Waitemata DHB patients think about the use of their aggregated data https://www.proquest.com/openview/710bfc64151376eda96c91bb7231d24d/1?pq-origsite=gscholar&cbl=1056335

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Thanks Robyn

The key question that this raises for me is how we should ask for and record patient consent for this type of data use here in New Zealand. It is clear that we must do this!!!

The Great Northern Care Record in the UK is an excellent example of how this can be baked into a EMR. It seems ripe for a national solution I think, as patient data is across all kinds of institutions all around the country. ?Somehow baked into the NHI?

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Thanks Robyn,

Thatā€™s a very interesting result. If we can (collectively) achieve all the preconditions that you state for sharing data in Hira, it bodes well for public good researchā€¦ And the result on the higher proportion of Māori being willing to share is very interesting. I hope this work is being fed into to the new Māori Health Authority, as data sovereignty (and sharing) is a big topic that they will be dealing with. (Hi out there to anyone from the nascent Māori Health Authority reading along!)

Best regards,
Keith

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Thanks Keith. Interesting the MoH has used our questions and repeated the survey amongst a population group online (versus ours which was a patient group inperson assisted and online) with mostly the same but some slightly different results. I will share once they are available.