The Emerging Health Technology Innovation team Data Digital are looking to host a series

Discussions
1

The Emerging Health Technology & Innovation team – Data & Digital are looking to host a series of workshops to explore digital consent from a consumer’s perspective, with the aim of creating a digital consent model framework for health data.

Each workshop will focus on a different area of digital health data consent, structured around themes & use cases.
Our current themes include:What is the age of digital consent? When is child’s data their own?Proving “I am me” – digital consent without proving who you are in person (e.g. online enrolment into a PHO)Sharing personal digital health information with the health system/researchers (e.g. wearable health data – fitbit etc)Family health history – is this yours to share? (e.g. Genomic testing is family history in another context. When is your data not just about you?)Does digital consent expire? (e.g. consent is likely to degrade over time, but how long it lasts will depend on the context. What is the scope of the original consent and the individual’s expectations?)What types of data have different consent models? (e.g. mental health, sexual health, genomic data)
This is an initial list – what have we missed?

Who is welcome to attend?
In these initial workshops we are looking for a wide range of experiences from consumers, health sector, & wider government sector employees.

What are the outputs from these workshops?
The knowledge gathered during these workshops will help us identify & define the scope of the digital consent framework, which will help guide future design of digital health services.

When/where will these be held?
A mix of virtual and in-person – Dates TBC

We welcome your feedback, and expressions of interest to attend.
Please feel free to contact the EHT team - @jon_herries, @eduddy, Dan Hope, Brett Annan & myself.

2

We looked into developing a digital consent model some years ago.

3

I’m interested - how can I participate?

4

Hi, I am interested

In terms of what is missing from your list how about

  1. What am I consenting to? E.g how much of my data, for how long and who is using it
  2. The privacy act and consent
  3. How is consent obtained? Eg social license, informed consent, etc

I tried to produce a map once to track where patient GP data went. I stopped once I realised that just about every organisation I could think of had some elements of patient data. ,i doubt that patients realise how many organisations hold some data about them which suggest consent is probably not what it could be.

5

I’m keen as well. I can certainly contribute the MOH consumer digital identity thinking and what we are going to deliver

6

Thanks George, we’re still finalising times & dates - will forward you on this info and how to attend once confirmed.

7

Thanks for the feedback and interest Gordon, appreciate it! Once times & dates are finalised will send you some updated info.

8

Thanks Inga, @eduddy has forwarded on to me some of this prior work.

9

Thanks Grant, will be in touch. Will also share on the MOH Yammer.

10

Hi @mary.crowe please take this as an EOI looks great thanks.

12

I’m interested and several others from Precision Driven Health will be as well. We are also supporting Dr Rosie Dobson’s joint PDH-HRC Postdoctoral Fellowship exploring consumers’ views about their health information. She would be an excellent person to include here though I suspect you have touched base with her already?

13

Hi, I’m definitely interested in participating. Please let me know when it is arranged. Thanks!

15

Yes very happy for our Clinical Services Manager involved. Very interesting and important topic.

16

Thank you to all who have contacted today, I’ve added you to our list and will be in touch. First workshop is looking like mid-April (prior to school holidays) at this point.

17

Hi Mary, I would be interested in attending the workshops. Thanks for initiating this project.

Rochelle

18

Thanks Rochelle! Will be in touch.

19

Hi Mary,

I would be interested in attending these workshops, as part of my role as Health Information Manager at the CDHB

20

Thanks for getting in touch Sandra, have added you to the list.

21

Hi Mary, I would be interested in taking part in this also

22

Hi @mary.crowe I am the Clinical Services Manager @Trent_Gifford mentioned and am very interested in being involved. Will look forward to the first workshop when dates get finalized. Thanks so much.