First, try to design a patient-facing single digital record system without consumer input. Second, insist that you do want input. Third, hide all pathways to input from public view.
Earlier this week I wrote a couple of stories about the single digital patient record rollout in NSW and the communication problem the SDPR Implementation Agency seems to be having.
It all stemmed from a report from Health Consumers NSW.
As late as November last year, HCNSW found that “most of the health consumers and consumer organisations we spoke to were not aware that the SDPR was being planned”, said the recently released report.
“They told us that NSW Health had not provided enough information and communication for consumers and the broader community.
“Consumers and consumer organisations emphasised the need for clear, simple, and accessible information about the SDPR that can be easily shared with their members and networks.”
HCNSW also said their members and consumers want to be part of the codesign process, to be consulted more about what an SDPR will look like, and how it will work for patients.
Now, this isn’t a small project we’re talking about here. This is a statewide rollout of an interoperability project designed to, ultimately, give patients better access, better information, better experiences of the health system and, at the very most basic of levels, better care.
You could argue that if the SDPR is not going to result in those patient-centred outcomes, then what is the bloody point of it all, right?
Patients. That’s what we’re all supposed to be about, right?
The SDPR’s rollout will begin in early 2026 and will be done in five stages, with completion due by mid-2028.
The first stage will include the Hunter New England LHD and Justice Health.
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(Just as a quiet aside, there is a big push in NSW parliament right now to split HNE LHD in two, so who knows what that will mean for projects like the SDPR rollout.)
I fired off some questions to NSW Health and although they didn’t respond in time for the first story, I was more than happy to write a second, containing their somewhat unsatisfactory answers.
We have a plan to engage with consumers, they said.
“SDPRIA has established a Consumer Experience Council to provide strategic input and support the planning of the new system,” said a NSW Health spokesperson. “Health Consumers NSW has been invited to be part of the Consumer Experience Council and this invitation is ongoing.
“In addition, the SDPRIA has developed a Consumer, Carer and Community Partnership Plan and established a consumer engagement team within the program which engages with consumers throughout NSW.”
I went looking on the appropriate websites for “Consumer Experience Council” and “Consumer, Carer and Community Partnership Plan”, and found absolutely nothing.
So, I fired off the obvious question, once again. Please send me the links to these resources, I asked.
At 1.55pm on Thursday I got the following one-sentence response from NSW Health:
“The information you have enquired about is not publicly available.”
I’m going to leave that there for you to read again for a tick.
“The information you have enquired about is not publicly available.”
The IA wants consumer engagement, but doesn’t want to tell consumers how to engage with it.
Schroedinger’s cat just wandered past. Closely followed by three deaf, mute, and blind monkeys. Oh, and there goes Murphy and his law.
In the words of that great communicator John McEnroe … you cannot be serious, SDPRIA.
You canNOT BE SERIOUS.