The association wants to see clearer, more enforceable guardrails before it will sign off on the AIHW’s proposed primary care data collection project.
A replacement for the BEACH program is finally in development, but the AMA has joined the RACGP in calling for stronger protection against commercial access and monetisation of GP data.
The Australian Institute of Health and Welfare is currently developing National Primary Health Care Data Collection (NPHCDC), which will comprise de-identified, unit-record primary care patient data.
But before the work of building the NPHCDC can begin in earnest, it needs a data governance framework.
The AIHW published a draft version of the framework for consultation in March.
According to the draft document, the data collected from general practices will be used for tasks like informing health services planning, answering population health questions, policy development and examining the relationship between health conditions and patient demographics.
It explicitly states that the data will not be used for compliance purposes, to benchmark or audit specific practices or to track individual patients and that access to unit-record data by private companies and commercial entities is prohibited.
In a submission published on Thursday, the AMA took issue with this last part specifically.
“The AMA recommends the current prohibition on private/commercial access to unit-record data be elevated into a plain English ‘red line’ statement that explicitly states there will be no on-selling, no licensing for commercial gain, and no sharing with marketing or pharmaceutical companies (including any pathway that enables targeting or segmentation),” the association wrote.
“If requests arise in future to use the dataset for additional research purposes, GPs who have provided practice data should be asked whether their dataset can be included.”
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It also described several “governance red flags” in the proposal and cited concerns that the work of general practitioners could be misrepresented if GPs weren’t actively consulted on and participating in the design of the data collection and coding.
“It is critical to protect against, as one member put it, ‘tokenistic and top-down levers applied to… busy private businesses’,” the AMA wrote.
“The Framework’s ‘no additional burden’ principle is crucial and the NPHCDC’s operations should be tested against this regularly.
“The AMA recommends strengthening this principle by explicitly stating that data quality uplift and standardisation will be supported through automation, tools and resourcing rather than shifting coding workload onto clinicians without appropriate administrative support and financial remuneration.”
In its own submission earlier this week, the RACGP called for stronger protections against data being used to audit clinics.
Like the RACGP before it, the AMA also requested representation on the advisory group to ensure that trust with the medical profession remains high.
