@lara, let us know how we can support you in this endeavour. And keep up the good work!
Regarding consent:
The fundamental issue is that this is such a tiny minority of patients. From what I have seen, less than 1% ‘really care’ (the ones causing @lara headaches), up to 5% care enough to occasionally withdraw consent.
The Informatics challenge is to cater for this vocal minority without poisoning the system for the vast majority that just want us to get on with proper data sharing without annoying them about it.
I am very much in favour of this. So then we need to begin to think about what exactly we want, or to put it better our communities need for best healthcare that they have confidence in.
We might learn a lot form Norther Ireland - albeit smaller, but has created a model using our type of technology.
The complexity of technical work depends upon the type of unity one is planning
Open another window and log on to see one of the other 3 portals
As 1 but with single sign on
Selected integration of databases
eg
i) single laboratory and imaging results database
ii) single (virtual) source for images
iii) single (virtual) source for discharge summaries and clinical letters
iv) other
Single desktop with tabs for data that cannot - or has not yet been integrated
Full integrated workstation supported by integrated data-sets
Each of these will need a audit support capability that can work on a continuous proximity basis - complex because it will require logging at both ends phone calls and the like.
The complexity level rises exponentially as one moves from 1 to 5
There is a virtual certainty that once a level is achieved that there will be pressure to upgrade to the next. as it will be seen to be time wasting and “a patient safety risk”, notwithstanding the current level of risk.
Local sharing arrangements - some complexity here as theses have been locally agreed on the basis of single DHB or regional sharing. Would they remain local or extend which raises the question of:- professional agreement, social licence and opt off arrangements.
Social licence
Each region has presumably consulted community and gained some type of social licence for sharing of data. So the question would be whether we need to repeat this for this quasi-national solution.
Would there be a right to opt off - I would think not as we are a single health system albeit run by 20 separate organisations.
None of these are reasons not to do this - but will be raised as such.
You have if correct - patient benefits
In other words the value proposition
This part of health informatics tends to be poorly understood and presented.
An option is to use the 6 dimensions of quality
Then make some assumptions about benefit and calculate what difference that might make in terms of outcomes, clinician time etc. - which can be converted into (assumed- or light green) dollars. In my experience there is pressure to keep this type of analysis out of formal documents, but I believe that it must be in and visible. The assumptions need to be conservative and easy to exceed to retain credibility.
Doing this well and exhaustively then challenging among ourselves would be a useful step. We would need a clear and straightforward set of benefits that would stand up to critics. A random set of apparent benefits is harder to sustain against opposition (learned that the hard way).
Safe -straightforward to come up with ideas - but harder to quantify
Effective - outcomes are hard to come by but there will be some
Patient centred - qualitative yes - better if we have a patient portal
Timely - plenty to find here
Efficient - should be lots to put i here
Equitable - very important we get some ideas in this space that are supported by relevant groups eg GM’s Maori Health
Well Nigel, it certainly will be a lot of work to pull that all together in the long term. But utterly worthwhile - as clinicians we can all see it. The challenge is communicating this to those who can make it happen.
Going for option 2 seems to be the sweet spot. From my limited understanding, the technical stuff should be possible as Orion has access to all the users of each portal and their credentials. It is the data sharing, ‘glass breaking’, and auditing / monitoring that will be the challenging thing to hammer out a national agreement.
@lara, it looks like you are the defacto national lead for this. Do you have a Ministry champion for it?
Stella Ward at Canterbury is the National CIO lead on it
with the recent change in the MOH health lead - we will have to restart the conversation with Shayne Must admit am just being a bit “coy” until I get the ADHB and Northland messages into the CDR - as that is when it becomes “regional” and that should be finished by April this year
Then hope to do it for Midlands first - as they have a lot of shared patients with Starship - prove the point that way and then go further
Hi,
Finally got around the DHB firewall…
The Midland regional programme does have integration across boundaries as one of it’s projects, and I believe Orion have been doing some work for us on this. As all four regions are moving to the same software, the ability to share completed documents should be straightforward.
As we move away from a document centric to a data centric workflow, it’ll get complicated, but we certainly aren’t even close to that problem yet.
BTW - note that the ability to share documents cleanly does imply consistent document metadata - eg the set of document type codes is the same between institutions…
Stella Ward at Canterbury is the National