This page contains information for GPs and Practice Managers, including links to downloadable 'plain language' statements and other useful Data for Decisions documents.
Individual patient medical records are important documents for patient care. When de-identified, and combined with thousands of other medical records, they create a powerful tool that has potential to improve health care and services through quality and safety measurement, research and accreditation.
What is Data for Decisions?
Data for Decisions, incorporating the Patron program of research, is a University of Melbourne research initiative that collects de-identified electronic medical records from general medical practices for research. General medical practices are invited to contribute de-identified data to the Patron primary care data repository. Our first partner practices came on board in 2018.
What is the data used for?
The de-identified Patron data is used to generate knowledge and inform evidence-based practice around topics related to medication safety, disease patterns and outcomes, prescribing patterns, health economics and public health. Researchers from different types of organisations can apply to use certain parts of the data as relevant to their research. A condition of access to the data is that researchers make community reports available to the public on this website, regardless of the outcomes of their study. Go to the Projects page to learn about approved research projects.
Can we say who will use the data?
The Data for Decisions program is designed so that more knowledge can be gained, to benefit more people, will less expenditure of precious research funds. Standard participation will have primary care providers consenting for their de-identified and securely extracted data potentially being used by many ethics and Data Governance Approved projects. However, in some instances practices decide to share their data for use only for a specified project. The data are housed in the same secure repository, but 'ringfenced' for this restricted use. When that project is finished the practice will be asked whether they would like to convert to full participation in Data for Decisions or withdraw their data altogether.
What are the benefits of taking part?
The ‘secondary’ use of de-identified patient data decreases the cost and burden of collecting new data for research. De-identified data that is incorporated into the Patron data repository contributes to a research program that aims to understand general practice activity, improve clinical practice and patient outcomes into the future.
The Patron data repository is under the umbrella of VicREN, (Victorian primary-care practice-based Research & Education Network), a practice-based research network (PBRN). Participating GPs interested in research have opportunity to participate more actively in research and potentially in Communities of Practice that can contribute to developing primary care research. Individual GPs can freely join VicREN which is managed from within the Department of General Practice, the University of Melbourne. General practices partners in Data for Decisions are part of VicREN's e-PBRNs. Some of our more engaged partners become Honorary academic members of the University of Melbourne's Department of General Practice - which in itself is associated with benefits.
How is the data kept confidential and protected?
Details of all participating practices and GPs remain confidential, and all patient and practitioner data are de-identified before they leaves the GP practice. Go to the ‘Security and Privacy’ page to learn more about the privacy measures built into the data extraction software.
Before researcher(s) are provided access to any de-identified Patron data their project must first be approved by the independent Patron Data Governance Committee and gain ethics committee approval from an NHMRC approved human research ethics committee. A further protection is that researchers are normally required to destroy the de-identified data that they obtained 5 years after publication of their last piece of research.
Are practices required to obtain patient consent?
In accordance with National Health and Medical Research Council (NHMRC) guidelines, a waiver of patient consent has been granted by the ethics committee. This means that individual patient consent is not required prior to the extraction of the de-identified data. Patients have the right to withdraw and can easily do so by informing general practice staff.
It is good practice for GPs or practice staff to inform new patients when they first collect their personal information that de-identified patient information from the practice is used for audit, accreditation and research purposes.
What is involved in taking part?
When a general practice agrees to take part, the University of Melbourne will arrange to install the research data extraction tool (GRHANITE®) onto a computer at the practice. The extraction of de-identified data will then occur automatically. Participating practices agree to display an information poster and study brochures in their patient waiting areas. If a patient chooses to withdraw, the practice facilitates this using instructions provided. Withdrawal is simple.
Some general practices may be invited to participate in a validation study where data stored in Patron is compared to data in the practice. From time to time practices may also be invited to actively participate in research or intervention studies related to general practice (this could include identifying patients for clinical trials). Any such studies would require additional informed consent. Practices are under no obligation to participate in these additional studies.
General practices have the option to say no to their data being used for research undertaken by, or funded by, commercial entities.
Are there any risks associated with participation?
The data extraction tool (GRHANITE®) uses a number of internationally recognised encryption mechanisms to protect data in transit, providing many layers of security. Each instance of GRHANITE® has a unique password and license, and site-specific encryption keys that are themselves encrypted.
GRHANITE® has been extensively used, over years, for other projects and we do not expect it to cause any hardware or software problems. Trained IT staff from the University of Melbourne will guide your installation of the data extraction tool and will be available to provide support as required.
Our GP partnerships: future goals
Data for Decisions is still essentially in its start-up phase. As the program matures we plan to provide useful feedback to general practices that may include benchmarking data, strategies for improving data quality and decision-making support tools. It is anticipated that the Patron data repository may also make participation in clinical trials and health services research more efficient.
We are working with GPs and practice staff to deliver information that is useful and wanted.
GPs and practice staff have opportunity to contribute to the Data for Decisions advisory committee and/or Communities of Practice.
See also our Resources page which includes the following forms and more: