Shows how transparency and controls are required for people to support the use of their data, another lesson for the NHS (again).
@BenB - this is the latest attempt from the NHS.
As a further update on this, here’s a recent article on this written by Ben Goldacre:
It refers to the NHS England policy paper from June this year entitled Data Saves Lives.
I note Ben Goldacre makes the suggestion that the NHS should “…consolidate all data analysis into a very small number of highly secure Trusted Research Environments. On this model, the analyst comes to the data, and leaves only with their results.” He points out that this is how census data is handled, and it seems from this article on Stuff that this is happening here with IDI data administered by stats NZ.
As noted by Jon’s post above, retaining trust of the public will be important.
In the future we will be getting increasing amounts of strucutred medical data. If this can be curated in a way that maintains people’s trust in the system, it will have huge potential to save lives and help us target our services more efficiently to help cover our increasing demand for health spending.
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Yeah - there is also the Goldacre review which was published earlier this year, there is a post somewhere here for it.
Further to that there was the review of the Australian shared record implementation:
Here
All suggest - transparency → consent/delegation-> control are the methods for engendering trust in our use of health data and this aligns well with Te Mana Raraunga’s principles.
We also published some national research at the start of the year thanks to @Rosie - she is fast becoming our national expert in this space. @BenB is also working on this from a D&D perspective.
The social license work:
MOH Health information use survey_Full report.pdf (635.2 KB)
Jon
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