Data Sharing examples

Discussions
1

Morning all,

I am keen to hear of health data sharing examples, both public and private, that demonstrate governance, alignment to standards, collaborative partnership and functional efficacy.
No need to explain them in detail - feel free to name them or share in brief. I will then get in contact directly.

many thanks
Becky

2

Hi Becky,

In my previous role, I facilitated the creation of the national St John/WFA data sharing/access agreement, signed in 2018, to access NMDS, NNPAC, mortality datasets and PHO service utilisation datasets via PSAAP at NHI level to cross-match with Ambulance and 111 clinical hub datasets. I know it’s still active but what do you need to know?

Kind regards

Samuel

3

Hi Becky,

I worked in several hospitals in the US who utilize Epic systems which offer patients a very detailed “My Chart” that offers a lot of information to the patient, including reference material relating to their diagnoses. I found it helped patients become more educated about their health history from reputable sources and facilitated & empowered people to confidently bring up conversations with their GP.

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4

Hi Becky
YourHealthSummary
Northern Region datastore and covid dsahboards
Healthshare
Testsafe
Regional clinical portal
Whanau tahi
There may be more, will have a hunt around
Robyn

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5

Hey Becky
I think the Anthropometry module used by the south island and the central region DHBs is a good example of both governance and data sharing.
The central region PACS is a good example of data sharing, although probably not so hot on governance!
Sadly, I am unaware of any example of good adherence to standards which have really worked for my (central) region - but can think of any number of examples where it hasn’t been present, and would happily share examples of lessons learned from those exercises!! Drop me a line if you want to chat - 021 277 5906. Mat

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6

Hi Becky,

We are currently working through a revision of the regional data governance structure and framework within the Northern Region. The initial scope is those data taonga where patient and/or clinical data is shared by more than one organisation and data is governed/ managed by more than one organisation, excluding those taonga that are national. We are creating a Head of Data position and the proposed structure is outlined below. It has not been communicated as yet but we are working through the comms strategy so might be best to discuss first before promoting J

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Cheers,

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7

Hey Becky - working through data sharing between regulators (i.e. Medsafe and Pharmacy Council) and how the other central agencies might be able to better work together re: health & safety of public related surveillance.
Jerome

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8

Hi Becky

‘Patients Know Best’ is a brilliant data sharing platform used around the world but largely England. The patient has access to their notes and care plans, each support service has the same access as the hospital team, community team and GP. The GP can develop an escalation plan based on a traffic light system for the patient to know what to do when their symptoms worsen and when to call for help.

Ngā mihi aroha

Jenny

Jenny Rākāsz | Director - Allied Health, Science & Technical (Dunedin)
Planning, Funding & Population Public Health and Surgical & Radiology Directorates

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9

https://patientsknowbest.com/ Wow!! That does look like a fantastic advance on the current patient portal model. Maybe this is the sort of thing that Hira should enable?

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10

Thank you all, fantastic examples and will be in touch. We are looking to use some exemplars as part of a data sharing best practice piece that is under development within Data and Digital.
@simon.ross

11

may not be the right angle but the utilisation of interRAI data for high level reporting allows us to see trends and needs while the surfacing of assessments in our cws

12

Hi @BeckyGeorge.
The best example in my experience is ‘HealthOne’ - a single health record sharing primary, secondary and community data across the South Island. Pegasus have done a good job is covering off the standards, policy (and politics) around the product. @martin.wilson

PS …Merry Christmas to all

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14

Ditto @Chris.Dever Chris.Dever comment including the complements of the season to all.

As a HIE HealthOne has several hundred thousand hits a month from registered Health Care Professionals across the South Island where the population is only a little over a million. The accesses continue to climb month on month and have done for years. It is based on a strong privacy framework and proactive privacy monitoring with follow-up. The tech is scalable over many DHB’s as exampled in the SI where there are 5 DHB’s using it. if this kit can be used for 20% of the NZ population I can see no reason why other DHB’s cant adopt while we await for HIRA and its associated apps?

PS finding stuff…

in the CDV tree of Concerto or HCS maybe

yep pretty much the experience we can all have. :frowning:

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