I’ve got a question related to this piece in the latest CiLN Newsletter:
The freshly minted HiNZ eHealth Forum is the new home of the CiLN. This move enables us to increase our links with HiNZ, open up conversations with our health informatics colleagues who aren’t clinicians, and embrace data sovereignty principles in alignment with Te Tiriti o Waitangi.
What do you mean by “embrace data sovereignty principles in alignment with Te Tiriti o Waitangi” in the context of the new forum?
If this is about the Forum being hosted onshore then I have a concern as it suggests data sovereignty is about the residency of data. The topic is data sovereignty is far wider than that but also it does not constrain us to onshore storing of data. Bell Gully has recently released the findings of some extensive work on data sovereignty which is a good read and in my view reinforces that we should not simplify this to data sovereignty = residency of data.
The HiNZ eHealth Forum is indeed hosted in New Zealand, but this is for practicality reasons rather than for data sovereignty per se. Having a short distance between server and users (virtually all of whom are in NZ) means short latency, which is worth the small increase in hosting costs. Supporting local industry is a bonus, as is the perception that we have more control of the data. Of note, our backups are stored securely offshore in the AWS data centre in Sydney as there is not an easily accessible NZ-based service.
The Bell Gully report is brilliant. In Section 3, it articulates the perception (amongst the Maori people they interviewed) that data residency is ideal, but what actually matters is access and control. This was the primary reason for the move here to the HiNZ eHealth Forum.
Under the Digital Health Networks, our data and conversations were under the control of a (benign) UK-based commercial entity. This entity (Digital Health Intelligence limited) was a good custodian, and exceedingly generous to us. However, several of their employees had full admin access to our data, ethnicity was not accounted for, and there were multiple practical difficulties with managing the community and access to it. Here in forum.hinz.org.nz, these issues are solved.
In addition, I’d like to quote our colleague Kate Yeo who was referring to our specific mention of Te Tiriti o Waitangi:
Thanks @shayne.hunter , for great point, and @NathanK, for good explanation and clarification. Please do join the @equity-ciln-wg to help with these ongoing important discussions
