A comprehensive, national primary healthcare data collection program is coming (good). But practices may not have say over what data gets collected (bad).
Work on the long-awaited primary healthcare data collection is finally underway, but the RACGP has some significant reservations about how much power general practice has been afforded within the framework.
Despite primary care being the point of entry to the health system for most Australians, there has never been a comprehensive, nationally consistent data collection effort covering general practice, mental health services, community pharmacy and the Aboriginal Community Controlled Health Organisation sector.
The last national longitudinal study of general practice activity was the BEACH project, which concluded almost a decade ago.
For general practice, the absence of a robust dataset has made it harder to produce research showing the extent of the value that a long-term GP-patient relationship brings.
The incoming National Primary Health Care Data Collection (NPHCDC) will comprise de-identified, unit-record primary care patient data and leverage existing consent pathways (e.g., arrangements between Primary Health Networks and data extractors).
But first, the NPHCDC needs a data governance framework.
The Australian Institute of Health and Welfare published a draft version of the framework for consultation in March this year.
This lays out what data will and will not be used for, as well as the de-identification processes which will be used and any quality control checks.
Under the “do use this data for” column is: informing health services planning and policy development, answering population health questions and examining the relationship between health conditions and patient demographics.
Under the “do not use this data for” column is: benchmarking or auditing specific practices, tracking individual patients and collecting data for compliance, enforcement, fraud detection or any other legal interventions of patients, practitioners and organisations in a health context.
In its response to the draft framework, the RACGP noted that any practice-level feedback reports – although valuable – may be perceived as benchmarking.
The RACGP also noted that GP activities, when flattened into datapoints, could be used to misrepresent the work of general practice.
“Whilst the Framework recognises the significant variations in data quality and a lack of data interoperability the RACGP has long standing concerns that poor data quality can lead to incorrect representation of the clinical work undertaken in general practice,” the college wrote.
“The Framework should take a stronger stance on favouring the use of coded data and data standards.
“There needs to be transparency on the data limitations to prevent misinterpretation of GP clinical activity and GPs must be involved in interpretation of data to ensure the complexities of general practice are captured.”
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It requested that any practice-level reporting be optional, co-designed with practising GPs and “permanently protected from regulatory use”.
The college also took issue with how much say GPs would be afforded over the data being extracted from their clinical information systems.
“The Framework should enable practices to approve, pause, or withdraw from data sharing at any time,” the RACGP wrote.
“General practices must retain control over what data can be extracted from their systems and shared with other organisations.”
The draft framework confirmed that free text information transcribed by clinicians would not be collected, given the potential for patient identification.
Another key concern from the college was the fact that the membership of the NPHCDC data governance committee and governance committee was not set in stone.
While the data governance committee, according to the draft documents, said that it could include GPs or RACGP representatives, this was not mandated.
“The [terms of reference] must recognise general practice as a valued and core stakeholder,” it said.
The NPHCDC advisory group, meanwhile, appointed members as individuals and not as representatives of organisations.
“This will weaken formal GP sector representation and may reduce the RACGP’s ability to ensure profession-wide perspectives are reflected,” the RACGP wrote.
