Reminded me of one of the prior discussions of Hira and the flow of information, and the lack of a central authoritative source – and its value in research, and the value of QA/auditing/research in contributing to health equity and a highly functioning health system.
… where tens of thousands of patient encounters are easily collated, with detailed demographic and clinical information. A few healthcare systems, national systems from Denmark and the pacific rim, some Canadian provinces, and the Kaiser system, spring to mind as those for whom these sorts of analyses are relatively straightforward.
I would consider it to be a design necessity for a project like Hira to be able to support robust whole system analytic efforts, and I worry the current direction is too fragmented to provide such data.
Thank you for sharing that Ryan. As an anaesthetist informatician I have experienced first hand the frustrations of challenging access to usable clinical data.
Basically, it takes a tonne of hard work to open up the doors to this data. i3 have done an amazing job on the software suite available to them, but they are an outlier. It would be wonderful if their good work could be easily leveraged across the whole system as repeating it 20 times is just not feasible.
We desperately need this to scale up. As Ryan stated, this is enormously challenging with a highly heterogenous system which requires bespoke work to make the data accessible in each part.
Yep the data team at i3/Waitemata DHB have done a great job with Qlik, developing northern region dashboards for COVID related data. Has moved us a long way from where we used to be. Also just posted this research on what patients think we are doing in terms of using their data for service improvement etc - there is more on this to come but first part published in NZMJ (just posted it on here!)
It’s more the idea that, as ideas are being created regarding how data flows through the system and clinicians and patients have timely access to the data they need to provide the best care – consider a siphon of sorts for data aggregation for monitoring the health system, public health surveillance, and quasi-randomised trials.
Still early enough in the process to consider that capability as a design requirement.
Totally agree Ryan, and i think that is the plan. Interesting the Great North Care Record example from @NathanK is only about providing healthcare for you, which we kindof assume is a given that you want people in the public health system to have access to your records in the public health system in order to care for you, but it didnt mention use of aggregated data for service improvement or population health.
Well, I recalled from a talk given by one of their crew that they ask for secondary use of data as part of the process - but I might be mistaken. It is quite a new concept. “Meta-consent” seems to be a useful term to describe it:
yeah all their public comms on the website is limited to healthcare, so that would be interesting as most patients we talked to said they would be happy for other uses as long as there is transparency and communication about these. On the other hand, the metaconsent paper only talks about research and I think our definition of what is research could be at issue - much improvement work is not considered research worthy of ethics approval by HDEC, so are we clear on where the boundaries lie or what the population considers to be research?