GPs and Practice Managers

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.

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. Visit the Projects page to learn more about approved research projects.

There are two categories of participation, standard (full) and specified (restricted).

Standard (full) participation: the participating primary care provider consents to their de-identified and securely extracted data potentially being used by multiple ethics and data governance approved projects.

Specified (restricted) participation: the participating primary care provider only consents for their de-identified data to be used in a specified project. The data is still housed in the same secure repository but is 'ringfenced' for this restricted use. When the project is finished, the primary care provider will be asked whether they would like to convert to standard (full) participation or withdraw their data altogether.

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 and Primary Care at The University of Melbourne. General practice partners in Data for Decisions are part of VicREN's e-PBRNs. Some of our more engaged partners become Honorary Academic members of the Department of General Practice and Primary Care.

Details of all participating practices and GPs remain confidential. All patient and practitioner data are de-identified before they leave the participating practice. Visit the ‘Security and Privacy’ page to learn more about the privacy measures built into the data extraction software.

Before researchers 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 five years after publication of their last piece of research.

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 at any time and can do so easily by informing staff at their general practice.

We recommend that GPs or practice staff inform new patients that their clinic is participating in Data for Decisions and that de-identified patient information from the practice will be used for audit, accreditation and research purposes.

When a general practice agrees to take part in Data for Decisions, 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 and easy.

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.

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.

We aim to provide useful feedback to general practices that may include bench marking 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.

If you would like more information or think you might like to participate in Data for Decisions, please contact us by email, phone or via the Expression of Interest form.

See also our Resources page which includes the following forms and more:

• GP Information Statement
• GP Consent form
• GP waiting room poster