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 studies or trials that seek to interact with patients or GPs 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 or be part of clinical trials, studies that develop and test new healthcare practices, procedures, protocols or quality improvement measures, 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. This can be done prior to submission of full applications.
Data access fees must be agreed and agreements signed prior to the release of data to any researchers.
Data application / access process
Steps to access and use 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. Complete the minimum section of questions required for your project feasibility and cost assessment. If cost and feasibility are agreed...
- Complete the remainder of the Data Access Application form and the Data Risk Management Plan (including its Appendix) before the application deadline (see next section).
- Obtain ethics approval from an NHMRC approved ethics committee (the full ethics application and approval letter need to be provided to the VicREN Manager 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 being given by the Data Governance Committee) liaise with Department of General Practice staff to document the Project Plan including data requirements and timeframe for 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 and ensure that you have sufficient computing power to analyse big datasets that contain multiple tables and potentially millions of rows.
- Undertake training around appropriate management of Patron data (see the Data security for guidelines).
- Be ready to receive the encrypted de-identified dataset (via SUFEX, a secure file transfer service) and then use it within the terms of Agreement with The University of Melbourne .
- Within one month, review the delivered dataset to ensure it meets specification and return your data delivery receipt.
Introduction to working with Patron 'Big data' (PDF 689.3 KB)by Dr Christine Hallinan
Application Deadline dates
2020 applications to access Patron data must be received by:
Friday 21st of February 2020 for review by the independent Data Governance Committee on 13th March 2020.
Friday 22nd of May 2020 for review by the independent Data Governance Committee on 12th June 2020.
Friday 14th of August 2020 for review by the independent Data Governance Committee on 4th September 2020.
Friday 13th of November 2020 for review by the independent Data Governance Committee on 4th December 2020.
How long does it take to get data access?
There are several factors that can affect how long it takes for researchers to get access to Patron data. You should allow 2-4 months depending on the complexity of your requirements.
- The timing of your application in relation to the quarterly meeting of the Patron Data Governance Committee. Aim to apply early so that our technical team can undertake feasibility analysis and providing a costing quote.
- The length of time lapsed before you liaise with the Patron data technical team after you gain approval to access Patron data.
- We work on a data minimisation principle. Patron data applicants are provided with only the data fields required to undertake their investigation. Allow for the time it takes for liaison between the Department of General Practice technical Patron team and your team for the development of the Client Data Requirement Specification (see the application to acceptance workflow diagram).
- How quickly applicant's respond to Patron technical team requests for information and decisions about data fields.
- Allow time for the Patron technical team to write the code to extract your agreed data fields and deploy the data to you.
- A legal agreement needs to be executed before deployment of data to organisations outside of the University of Melbourne. There can be delay if external organisations seek amendments to the standard legal agreement used. A copy of the standard agreement is shared with data applicants early in their application journey. It is up to the applicant to initiate review of the legal agreement by their legal advisers. (University of Melbourne data recipients must sign an MOU).
- As noted earlier, data recipients have one month to review the delivered dataset to ensure it meets specification.
- Allow time to familiarise yourself with the dataset and perform data cleaning before data analysis can be undertaken. (Consider becoming part of the Patron data users group).
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.