Linkage of clinically relevant data
The challenge:
Improving detailed clinical data linkage, such as pathology reports and genetic information, with existing health data to hasten research and treatment development, and make it more consistent and accessible.
Critically, this project expanded on how health data is linked and used. Until now, most data-linkage efforts have focused on administrative information, like hospital admissions or claims data. While valuable, this leaves out a wealth of clinically rich information—such as pathology reports, imaging results, genetic data, and other omics data—that could drive breakthroughs in healthcare and therapeutic development.
Focusing on routinely integrating clinical data, this project investigated new possibilities for research, innovation, and therapeutic advancements—ensuring that health data is used to its fullest potential to improve treatments and outcomes.
This two-year project was a forward planning effort by PHRN data linkage units in the clinical data linkage space and focused on collaborative planning and investment by working closely with the PHRN National Office on future plans. The long-term aim of this initiative is to minimise access timeframes and increase availability of linked clinical data through routine linkage and promote greater consistency across the PHRN network in new areas of clinical data linkage with data for clinical trials and medical product development in Australia, to ensure research and industry realise the full potential of these data resources.
The project aims to:
- Improve the efficiency and cost-effectiveness of data linkage in clinical trials
- Enable clinical trial researchers to more easily discover, link, access and learn about linked data
The approach:
This project was conducted in two phases.
Phase 1: Scoping – All PHRN data linkage units participated in the scoping phase which investigated the demand for specific clinical data collections, future plans for routine linkage of clinical data collections, opportunities for collaboration and barriers and risk mitigation.
Phase 2: Implementation – The following jurisdictions (NSW, ACT, VIC, QLD, TAS, SA and NT) participated in this phase which investigated the requirements and barriers to routine linkage of pathology data.
Our collaborators:
- Centre for Health Record Linkage (CHeReL) (Project Lead)
- Data Linkage Services WA
- SANT DataLink
- Centre for Victorian Data Linkage
- Tasmanian Data Linkage Unit
- Australian Institute of Health and Welfare (AIHW)
- Data Linkage Queensland
Status:
Complete
Related resources:
In conclusion, the overall findings of the consultations conducted by the jurisdictions during the Therapeutic Integration Project indicated more work is required to enable the use of pathology data for research purposes.
On a positive note, many jurisdictions had some success seeking approvals or providing public pathology data for research projects on a one-off, case-by-case basis or reported that public pathology providers are open to providing data for research on a case-by-case basis.
Some key challenges experienced the jurisdictions included:
- varying governance and legal barriers experienced when approaching private versus public providers.
- a lack of capacity or expertise by pathology providers to extract data for research purposes;
- a lack of unified public pathology laboratory information management systems;
- the existence of multiple public and private pathology providers;
- a lack of consistent reporting of pathology tests and results within systems and across providers and jurisdictions; and
Although many pathology providers expressed interest in making the data available – they were concerned about resourcing and upfront investments to support a systematic provision of pathology data in an operational arrangement.
These governance and technical issues point to a complex system. Further consultation work is required, this may be facilitated by partnership negotiations between PHRN and public pathology providers.
Importantly, this project initiated a conversation between the jurisdictions and their respective pathology providers. The jurisdictional data linkage units intend to continue engaging with the pathology providers and activities beyond the scope of this project to enable future use of pathology data for research projects and progress towards the aims initiated by this project.