Making existing, de-identified healthcare data available to researchers decreases the burden of data collection and has the potential to deliver public health gains through better informed epidemiological research.
What is Data for Decisions?
Data for Decision is a Department of General Practice, University of Melbourne research initiative that incorporates the Patron primary care data repository and accompanying program of research. Consenting primary care practices, mostly in Victoria, Australia, are invited to contribute de-identified data from electronic patient medical records for research purposes. GRHANITE software is used to facilitate de-identified data transfer. The data is then curated and securely warehoused. A powerful feature of GRHANITE is that it can facilitate data linkage between different de-identified datasets. This enables much greater insights into the patient-journey through the health system.
Researchers can apply to access the stored data as relevant to answer certain research questions. The data is useful for epidemiological, public health and health economic studies, including around quality improvement, understanding long term medication effectiveness, prescribing and disease patterns.
Use of data from Patron to identify practices or patient participants for intervention studies requires prior consent from general practices. Examples of intervention studies could include inviting practices (or practices with patients) that have certain characteristics to contribute to clinical trials, studies that develop and test new healthcare practices, procedures or protocols, or projects developing decision support tools for evidence-based care and appropriate prescribing.
There are costs associated with collecting, curating and storing the data. We run on a not-for-profit, cost recovery model. Projects must be individually costed prior to their undertaking.
Projects will be individually costed and agreements signed prior to the release of any data to any researchers.
Data access process
Steps to accessing and using data within the Patron primary care data repository – researchers must:
- Contact the Collaboration and Network Manager - Research at the Department of General Practice.
- Request and complete the Data Access Application form.
- Liaise with the VicReN Manager and other University staff as directed, to determine project feasibility (in-terms of research question, data and cost).
- Obtain ethics approval from an NHMRC approved ethics committee (the full ethics application and approval letter needs to be provided).
- (Subject to approval by the Data Governance Committee) liaise with Department of General Practice staff to document the Project Plan.
- Sign a legal Agreement with the University of Melbourne stipulating compliance with the ethical, legal and regulatory obligations related to privacy, data management and security; and payment of charges as specified in the agreement.
- Work with Department of General Practice staff to define the study dataset and data deliverables.
- Be ready to receive the encrypted de-identified dataset and then use it within the terms of their Agreement with The University of Melbourne.
- Within one month, review the delivered dataset to ensure it meets specification.
There is more information about Data for Decisions throughout this website. Please refer to the Contact Us page for details on contacting the VicReN Manager.
The Data for Decisions program protocol includes further details.
**Link to program protocol (under construction)**