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 (currently mostly in Victoria), 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 that have certain characteristics (or patients with certain characteristics) to 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.
The number of practices and patients contributing data to the Patron repository is not static. Please contact us for more information on data characteristics. The data is currently predominantly from Victorian general practices and community health care settings. In 2020 there were approximately 3.5 million de-identified individuals (patients) represented in the dataset and around 80 million patient visits. Some 38% of practices are located in regional or rural locations. All persons (patients, staff and clinicians) are de-identifed by the GRHANITE® research data extraction tool before data are extracted.
If you would like to know more about privacy protection, record linkage or research that requires practice or patient re-identification, please contact us.
Getting a quote
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 should 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.
If you require a quote for access to Patron data for a grant application, please contact us as early as possible.
- To obtain a quote: Contact the VicREN/Patron Collaboration and Network Manager at the Department of General Practice for an application form (the form is regularly updated, please use the current version). Complete and submit the minimum sections required for project feasibility and cost assessment. Please allow 7-14 working days.
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 us for more detailed information about data fields). Applicants should ensure sufficient computing power to analyse big datasets that contain multiple tables and potentially millions of rows.
- Contact the VicREN/Patron Collaboration and Network Manager at the Department of General Practice for an application form (the form is regularly updated, please use the current version). Complete and submit the minimum sections required for 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) and submit 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 the VicREN Manager to document the contractual Project Plan which accompanies the Data Access legal Agreement (or MOU for University of Melbourne applicants). The legal agreement stipulates compliance obligations 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).
- All researchers accessing Patron data must sign a Data Access Acknowledgment for Individuals and complete the brief, online compliance training module housed in the Patron Data Users' Community of Practice site. The site also contains a Data User's discussion board and important documents including a detailed Data Dictionary.
- Approved applicants work with Patron technical staff to refine the study dataset. Approved Data Recipients should update their Data Risk Management Plan once more information is known about how they will access / house their tranche of data.
- Be ready to receive or access the encrypted de-identified dataset and then use it within the terms of the legal agreement (or MOU) 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
2021 applications to access Patron data must be received by:
Friday 19th of February 2021 for review by the independent Data Governance Committee on 12th March 2021.
Friday 14th of May 2021 for review by the independent Data Governance Committee on 4th June 2021.
Friday 13th of August 2021 for review by the independent Data Governance Committee on 3rd September 2021.
Friday 12th of November 2021 for review by the independent Data Governance Committee on 3rd December 2021.
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. Much will depend on the timing of your application and on whether amendments to your application are required by the Data Governance Committee. You should allow 2-4 months depending on the complexity of your requirements - longer if you need to apply for ethics approval AFTER receiving Patron Data Governance Committee approval.
- The timing of your application: The Patron Data Governance Committee meets quarterly. Aim to apply early so that our technical team can undertake feasibility analysis and provide a 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 applicants' 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).
- Sometimes Data Governance Committee approval is gained prior to Ethics Committee approval. Data will not be provided until approval to specially use Patron data is obtained from a NHMRC registered Ethics Committee.
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.