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 in 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 subsets of data from the Patron data repository 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 the Patron data repository 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 should:
- Check whether the Patron dataset contains data that could help you answer your research questions by looking at the Patron databook.
- Contact the VicREN Collaboration and Network Manager at the Department of General Practice to discuss the feasibility of your proposed project, data requirements and the potential cost of accessing data before you submit an application. If feasibility is agreed...
- Complete the Data Access Application form and the Data Risk Management Plan before the application deadline (meetings are quarterly).
- Obtain ethics approval from an NHMRC approved ethics committee (the full ethics application and approval letter need to be provided prior to receiving data). It can be helpful to have ethics approval prior to the Data Governance Committee review of your application. Note: University of Melbourne applicants may be able to apply for Project within Program ethics approval.
- (Subject to approval by the Data Governance Committee) liaise with Department of General Practice staff to document the Project Plan including data deliverables.
- 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 (see summary of the legal agreement and researcher checklist).
- Work with Department of General Practice staff to define the study dataset and your data management strategy.
- 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 and return your data delivery receipt.
Application Deadline dates
Applications to access Patron data must be received by Friday 15th November 2019 for review by the independent Data Governance Committee on 6th December 2019.
Meetings of the independent Patron Data Governance Committee are quarterly.
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.