MidCentral DHB is trying to set up a Data Governance and Stewardship framework for our district. As one of the artefacts from the workshop is a data-sharing agreement between the DHB and the PHO. With the aim that other agencies and interdepartmental colleagues can join later.
Could I ask if others have been down this road and what was their experience? Also, would anyone be prepared to share any data-sharing agreements they have developed? As usual, I am very keen to avoid re-inventing the wheel.
In Northland we are exploring this issue including the issue of Maori data sovereignty . Happy to connect you directly to appropriate people here in Northland
We have a functioning Metro Auckland Data Sharing Framework to support data sharing between the 3 metro Auckland DHBs, 7 PHOs and ST John. Alongside this is a jointly developed data sharing platform known as HealthSafe. Governance consists of a 'Stewardship" group and a “Custodian” group, and it is managed operationally by our Healthsafe Manager. We are currently undertaking a review of the framework as there are a number of areas identified that need improvement.
It has not been, and continues to not be, an easy path. There are multiple stakeholders with differing perspectives and goals. My advice is to spend a LOT of time upfront to achieve a clear consensus on purpose and vision, and ensure there is plenty of time available for stakeholder management.
The Healthsafe consultation document was well received nationally and I believe others may have run with it just not CDHB. I believe
we are trying to start again as we speak.
I agree with Campbell as I was on both custodian and stewardship group for 3+ years at the Metro Auckland Data Sharing Framework group. It’s a hard task to get alignment, both internally between parties and externally. But the Auckland model functioned fairly well, even with the mixed opinions.
The Auckland model was a lot more flexible than the Christchurch earlier model, but definitely a lot more structure than some of the ones I was previously privy to in other smaller DHB regions.
The quality and quantity were quite beyond what I expected. I agree with @michael.hosking this has been a fascinating thread to date. Aside from CLiN and HINZ conferences, there is little communication between the regions. Actually, I find that communication within the region is pretty challenging by itself.
@martin.wilson, I hope that you can explain how data sharing has been challenging but you have the excellent HealthOne system. Thanks for the consultation document and like @lara, I would love to hear the backstory. So this is one of the main advantages I see in CLiN network.
@grahame.jelley, what is the best way to get in touch and @campbell, when later in the week would best suit you to chat.
Once again, thanks, everyone for your help and support.
@Greig and team, if possible, it would be great to join this conversation for the work I’m doing currently on the Simpson review. I’m keen to hear people’s ideas on how we might overcome some of these issues
Yep you win some you loose some. I am pretty happy we won with HealthOne. It was not without challenge though. The first time I tried to socialise the concept it was like a public execution (of me) GP thought I was selling them out. The learning was I had started thinking this is best for the patient and was not prepared with Kevlar jacket. The second time it was all about making GP’s job easier (this time with un-needed Kevlar jacket) and they were signing up at the door. It was still good for the patient but I did not realise that would not sell it.
Happy to talk about other data sharing (PHO hospital) in a quieter context
Hi Greg. It would be worth speaking to Simon Ross at the Ministry of Health. He is responsible for sector advice on data governance, and area where I will be increasing capacity. Simon has been assisting a DHB / PHO with their data sharing needs. Capital & Coast DHB have one worth looking at. Rachel Haggerty can put you onto the right person. Cheers
Hi Greg
Apologies for the delay in replying,
I’ve been away.
Laura Cleary and I have some work underway
to collect such agreements from around the country from DHB Privacy Officers.
Laura may be able to comment on how that’s going.
I have been helping a Southern DB and
WellSouth negotiate an agreement but that is on hold for now and not in
a form that could be used as an example.
Aleksandar Zivaljevic may be able to
help with what they have in place in the northern region. Aleksandar Zivaljevic
Programme Manager Metro Auckland Data Sharing Primary Care |
Primary Health & Community
Services
