National Framework Targets Fragmented Health Data Standards

The Australian Digital Health Agency (ADHA) concedes adoption of standards remains “sporadic” more than two decades after foundational digital health work began in Australia but claims a new framework will drive uptake.

Launching a new National Framework for Digital Health Standards this week, Agency Chief Executive Officer Amanda Cattermole PSM said, “Different organisations have developed and applied standards in isolation, with limited coordination to fit those pieces together across the system.”

“The National Framework for Digital Health Standards provides clear, practical guidance and aligns governance, standards development and implementation across government agencies, jurisdictions, health services, partners and industry.”

The 38-page frameworkc proposes a national governance model, formal standards selection criteria and a new Standards Academy. It targets inconsistent uptake by software vendors, hospitals and health services.

The framework points to SNOMED CT-AU as an example of slow adoption. The former Australian Health Ministers Advisory Committee endorsed it as the national clinical terminology in 2005.

The report states its “implementation and use in clinical information systems and digital health solutions is not nationally consistent”.

HL7 v2 messaging has achieved near-universal use in some sectors. Transition to the newer Fast Healthcare Interoperability Resources (FHIR) standard is still in progress across Commonwealth Government systems.

The framework identifies six structural barriers to national adoption. These include vendor discretion over which standards to support, commercial incentives to build proprietary alternatives and the cost of upgrading legacy clinical systems.

It also blames “limited policy drivers (legislative, financial) to encourage sector-wide implementation of interoperable solutions and standards”. The framework cites the absence of a national governance system for endorsing and adopting information-sharing standards as a key gap.

The Agency says privacy and cyber security risks have constrained the pace at which legacy systems can be modernised. Business cases must also account for change management, training and software replacement costs.

Five recommendations

The framework sets out five recommendations to be pursued with the Department of Health, Disability and Ageing (DHDA), Standards Development Organisations and jurisdictions:

  • Establish an enduring national governance model for standards adoption.
  • Strengthen the evidence base for standards benefits.
  • Build workforce capability through training and education.
  • Enhance communication, collaboration and engagement.
  • Provide practical implementation support including catalogues, procurement guidelines and test environments.

A National Roadmap for Digital Health Standards will be developed alongside the framework to signal transition timeframes for sector planning.

ADHA points enterprise architects, information managers and procurement teams to several existing tools. These include the Digital Health Standards Catalogue, Procurement Guidelines, the National Clinical Terminology Service and the Australian Register of Conformity.

The agency has opened a Standards Academy offering free training on SNOMED CT, GS1 and FHIR for clinicians, developers, policymakers and industry. https://www.digitalhealth.gov.au/digital-health-standards/standards-academy

Aged Care Clinical Information System (ACCIS) Standards have also been developed to address recommendations from the Royal Commission into Aged Care Safety and Quality.

The framework includes a conformance and assurance pathway covering clinical safety, cyber security, architecture and design, legal and policy requirements for vendors connecting to national infrastructure.

Mandatory sharing approaches

Agency Chief Digital Officer Peter O’Halloran said the framework is needed as legislated information-sharing obligations take effect.

“As mandatory sharing expands to more key health information, scalable and conformant national digital infrastructure becomes critical to safe, reliable information sharing across the health system,” Mr O’Halloran said.

Australia is rolling out the Health Legislation Amendment (Modernising My Health Record - Sharing by Default) Bill 2024. The legislation will require pathology and diagnostic imaging providers to share test results to My Health Record by default.

Mr O’Halloran said pathology views have grown 112 per cent over the past year, from 54 million to 114 million. Diagnostic imaging views are up 72 per cent.

The framework also positions standardised terminology as a control for emerging artificial intelligence risks. It states nationally adopted coding maps reduce “the risk of incorrect or hallucination impacted creation of structured data”.

The framework cites overseas examples where legislation has been used to force standards adoption. These include Canada’s Bill C-72, which proposes prohibiting data blocking. The US 21st Century Cures Act mandates FHIR-based certified health IT. NHS England’s Data Saves Lives strategy links funding to interoperability conformance.

A 2024 Productivity Commission research paper on leveraging digital technology in healthcare found Australia’s health information environment “remains fragmented”. It said modernisation of national digital health infrastructure is critical.

Download the framework here.