News

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Report the ‘first step’ towards nationwide primary care data asset

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According to the consultation report released by the Australian Institute of Health and Welfare (AIHW) this week, raising patient awareness and acceptance of the National Primary Health Care Data Asset (Data Asset) will be a specific focus in the second half of 2019.
 
University of Melbourne academic and member of the RACGP Expert Committee – Research (REC-R), Dr Jo-Anne Manski-Nankervis, told newsGP the consultation represents the ‘first step’ in the Data Asset’s development.
 
‘Positively, the AIHW has engaged in wide representation of a broad group of stakeholders including general practice and there is acknowledgement that it is important the data collection process should be transparent, profession-led and general practice involved in the interpretation of data,’ she said.
 
‘The development of the governance structure and mechanisms of data flow are going to be important to consider moving forward, as well as the data that is eventually housed in the asset so that it is of value to shaping health policy, providing data back to general practice and informing the care that is provided in the community.’
 
Privacy concerns dominated the lead-up to the widespread adoption of My Health Record, while similar fears plagued the Practice incentive Program Quality Improvement (PIP QI) Incentive prior to its launch on 1 August.
                               
So, while many believe the Data Asset will support a better understanding of what happens to patients in the health system – including their diagnoses, treatments, and outcomes – stakeholders have stressed the need to effectively communicate these benefits.
 
‘Reassuring the public that appropriate governance and security arrangements will be set up to protect any data collected will be integral to this process,’ the report states.
 
‘Improving patient outcomes and experiences was ranked [as] the highest priority use of the Data Asset by the majority of workshop and submission participants.’
 
Feedback for the report was gathered throughout the first half of 2019 via a series of consultation workshops and an associated online public submission process, which will be used to guide the process going forwards.
 
The consultations involved a wide variety of stakeholders in the mainstream primary healthcare sector, including researchers, consumers, governments, health service providers, commissioners of health services, and medical software industry partners.
 
These stakeholders ‘recognised the potential for the Data Asset to improve understanding of the nature, importance, and diversity of primary care in Australia’ and ‘strongly supported the need for primary healthcare data that can inform quality improvement, planning, and population health’.
 
Other potential ‘key opportunities’ stemming from the Data Asset include its ability to:

• Drive quality improvement

• Provide evidence for the efficacy of primary healthcare and, by extension, support evidence-based funding

• Enable better population health planning and direction of resources

• Improve the visibility of rural and remote primary care needs  

However, before these benefits can be realised, a ‘roadmap’ showing the best method for securely and comprehensively collecting the appropriate data still needs to be formalised, which is the next step in the process.
 
How might it work?
The report recognises that multiple initiatives at the state, territory and national level could impact on, or be taken advantage of, in establishing the Data Asset.
 
Respondents also widely agreed that PIP QI and My Health Record will have important implications and, along with rural health and data sharing reforms, might provide opportunities in its development.
 
Rather than duplicate current avenues for reporting, it’s expected the Data Asset will build on existing frameworks, data sources and governance processes, as well as identify primary healthcare data gaps and new sources to fill them.
 
Consultations stipulated that the process be transparent, with specified criteria, and profession-led. For example, clinician feedback advised that a ‘general practice cultural lens’ should be applied to the collection of general practice data to ensure ‘accurate interpretation’ of the information.
 
It was also recommended that any data being collected should be ‘incentivised and resourced’, while simultaneously not creating an additional burden to clinicians. 
 
‘There is a need to provide clinicians with business intelligence and benefits, such as the opportunity to view the transition between primary and acute care, as well as interactions with other healthcare providers, including specialists,’ clinician feedback stated.
 
‘The Data Asset should enable data-driven quality improvement at the practice level, and any reported measures should not be punitive.
 
‘There must be a high level of transparency in any release of data from consulting clinicians to ensure trust is maintained between client and clinician.’
 
Generating consumer interest in the benefits, while providing reassurance that privacy will be maintained came through ‘consistently’ as the biggest challenge to overcome.
 
The report states that a roadmap will be developed by the end of 2019, based on feedback received during the consultation process. It will then be presented to the project steering group; however, the terms of reference and structure of this group are yet to be finalised.
 
Likewise, the finalisation of the PIP QI was in progress during the workshop timeframes, so there is no definitive information about what its impact might be on the development of the Data Asset. But it was acknowledged that it could be of considerable significance by normalising the provision of data from mainstream general practice via PHNs to the government.

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Australian Institute of Health and Welfare data primary health research

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