De-identified electronic medical records of more than 800,000 patients
Long-standing relationships with practices facilitating enhanced data quality
Linked patient reported outcomes for more than 600 patients
OPCRDA covers the main Australian clinical systems (Best Practice, Genie, Medical Director)
To help understand the information on this page, the types of data mentioned are described below:
Personal data or information
This is information that identifies the person that it relates to. Personal data contains information or identifiers that either by itself or when combined with other information, can identify the person the data relates e.g. name, date of birth, address, contact information, etc
This is patient data where information that will identify the person (e.g. name, date of birth, address, contact information) has been stripped out or replaced by a code that cannot be traced back to the person the information relates to.
This is information which cannot be traced back to an individual and you cannot identify the person the information relates. It is not personal data.
Optimum Patient Care Research Database Australia (OPCRDA) is a not-for-profit research database established and maintained by Optimum Patient Care Australia Pty Ltd (OPCA) – a social enterprise which provides accredited quality improvement programmes to support healthcare providers (e.g. general practices and specialist practices) across Australia with management of patients with chronic diseases.
OPCRDA collects de-identified patient data from GP practices and respiratory and allergy specialist practices across Australia, and then provides anonymised patient data to academic and non-academic organisations for ethically approved scientific, medical and public health research. OPCRDA also supports the conduct quality improvement initiatives, feasibility assessments and exploratory analyses.
WHY DATA IS COLLECTED FOR OPCRDAResearch is important to help improve our understanding of the causes, prevention and treatment of diseases, as well as the quality of care patients receive. Patient health records contain important information which is vital for medical research. For more than 5 years, practices across Australia have contributed de-identified patient information to OPCRDA for quality improvement, scientific and medical research. The value of OPCRDA is that it provides anonymised data from real-life patients which is used to conduct scientific and medical research. Researchers come to access anonymised research data from OPCRDA to answer their research questions. The funds we get from OPCRDA research are vital for us to continue providing free quality improvement programmes and research support services to practices across Australia.
RESEARCH ETHICS APPROVALOPCRDA has Royal Australian College of General Practitioners (RACGP) Human Research Ethics Committee (HREC) approval to collect de-identified patient data from participating GP practices or centres, and to provide anonymised patient data for research purposes. OPCRDA has Bellberry HREC approval to collect and store anonymised patient data from participating respiratory and allergy specialist practices for research purposes. RACGP NREEC Reference: 18-013 Optimum Patient Care Research Database Australia Approval Date: 10 July 2019 Expiry Date: 10 July 2024 Bellberry HREC Reference: 2020-11-1196 Optimum Patient Care Research Database Australia (OPCRDA) Approval Date: 13-Aug-21
DATA ACCESS GOVERNANCEThe Anonymous Data Ethics Protocols and Transparency committee (ADEPT) is an independent body of experts and regulators commissioned by the Respiratory Effectiveness Group (REG) to govern the standards of research conducted on internationally recognised databases, including OPCRDA. Anonymised data from OPCRDA is only provided to researchers who have had their research reviewed and approved by ADEPT. The ADEPT committee approval decision is based on a review of whether: Practice and patient confidentiality will be maintained There is a well-defined hypothesis or clear question to be addressed OPCA data are suitable for the research The methodology is considered appropriate and robust There is scientific and academic rigour All research must have a scientific or public benefit and must not pose any risks to patients or data subjects. The ADEPT committee will deny immediate access to OPCRDA and will advise researchers to seek additional HREC approval if the research project is outside the scope initially approved by the initial HREC. This is not exclusive to but can include a research project that meets any of the following criteria: Any research which requires information beyond secondary use of routinely collected data (e.g. interventional, experimental or randomised research including cluster randomised trials) Where the research topic or data being used in a project is about vulnerable populations or sensitive conditions Any research which may have some degree of risk or burden beyond that associated with routine care
APPROVED RESEARCH PROJECTS USING OPCRDA DATA
Primary care research projects
An Australian-based Study on the Patterns of Short Acting Beta-2 Agonist (SABA) use and Its Potential Effects on Asthma Control: SABA in Asthma Australia
ADEPT approval number: ADEPT1819
Impact of OPC Clinical audits
ADEPT approval number: ADEPT0521
Addressing the burden of respiratory disease in General Practice: A real-life study focusing on high risk asthma and COPD patients
ADEPT approval number: ADEPT1820
Characterisation of the Australian adult population living with asthma: Exacerbation frequency, long-term OCS use and adverse effects
ADEPT approval number: ADEPT0521
A study on the Prescription Patterns of Short Acting Beta-2 Agonist (SABA) and its potential effects on asthma control: A Cross-Sectional Study on SABA use in Asthma
ADEPT approval number: ADEPT1819
Five years of COPD primary care: Patterns of management of high-risk COPD and opportunities for optimising care in Australia 2015-2019 - Study Protocol
ADEPT approval number: ADEPT1222
DATA HELD IN OPCRDA
OPCRDA currently holds over 958,362 de-identified patient records for research and patient reported information and outcomes data from 668 patients.
Observational research data
OPCRDA holds de-identified patient data collected from GP and respiratory and allergy specialist practices who receive OPCA quality improvement programmes and have agreed for the data they provide to be used for research purposes. This includes patient health information, questionnaire responses, tests and medication/drug information. We call this observational research data because the data can only be used for a research that does not involve any direct patient participation as patients cannot be identified. Participating practices may contribute de-identified patient questionnaire responses or data to OPCRDA, provided that the practice consents on behalf of their patients or have consented their patients. OPCRDA never receives or holds any patient identifiable information such as name, date of birth, address, IHI or Medicare number. OPCRDA does not receive any data for patients who have expressed to their practice that their patient data should not be shared for research.
Patient-consented research data
Data collected through clinical research supported by OPCRDA is always de-identified and is not personal data. OPCRDA-supported clinical research or a clinical trial is where patients have been invited by their GP practice or doctor to participate in a study and the patients have consented to taking part in the study. All clinical trials require approval by human research ethics committee.
Data linkage to OPCRDA
De-identified data in OPCRDA can be linked to other healthcare data for better research. The de-identified data may be linked with or supplemented with related information from other national and regional sources such as: • Hospital data • Disease registry data for e.g. severe asthma • Other datasets as needed for particular studies
HOW DATA IS COLLECTED FOR OPCRDA
OPCRDA is committed to protecting the confidentiality of patient data it receives from practices. OPCRDA receives de-identified patient data from GP and respiratory and allergy specialist practices, and then provides only anonymised data for ethically approved research.
The process of how we collect and provide data from OPCRDA is described below:
Practice agrees to contribute their de-identified patient data to OPCRDA
Individual patients who have opted-out of their data being shared are excluded from any data sent by their practice to OPCRDA
Researchers request access to data from OPCRDA for a specific study. Access in this case means to receive an anonymised research dataset from OPCRDA required for only that specific study, and not access to the entire OPCRDA database.
The de-identified data required for the approved research is then fully anonymised before it is provided to the researcher. Anonymisation involves removing any information which by itself or when combined with other information may possibly identify a patient. You cannot identify a patient from anonymised data or from any results or reports from anonymised data.
Practice is supported by OPCA to set-up their electronic health record system to allow only patient data that has been de-identified to flow to OPCA. This means patients cannot be identified from the data the practice sends to OPCA. OPCA never receives any patient identifiable information such as name, date of birth, full addressor, IHI or Medicare number from the practice.
OPCRDA has ethics approval to receive and provide patient data for research.
All requests by researchers to access data from OPCRDA are reviewed by an independent body called ADEPT. Only research approved by ADEPT can receive an anonymised research dataset from OPCRDA.
Researchers sign a contract called a Data Sharing Agreement, which ensures researchers adhere to strict terms and conditions governing how the data is used and for how long they can hold the data.
HOW WE USE DATA IN OPCRDA
OPCRDA has National Research and Evaluation Ethics Committee (NREEC) approval to receive and provide patient data from GP practices for scientific, exploratory and public health research. Only research that has been reviewed and approved by ADEPT can receive anonymised research data from OPCRDA.
De-identified data in OPCRDA is anonymised before it is used for research in accordance with the Office of the Australian Information Commissioner’s (OAIC) de-identification guide and framework, and the Australia Privacy Act. This means that you can never identify a patient from OPCRDA data or from any results or reports from OPCRDA.
The anonymised research data is provided to approved researchers for only a limited period of time, usually 12 months. Once they have completed their analysis to answer their research question(s), they must destroy the data and share their findings for public benefit.
OPCRDA data is never sold or provided for insurance or marketing purposes.
DATA SECURITY AND PROTECTION
Although information held in OPCRDA is de-identified, security measures are in place to protect data held in OPCRDA to the same standards as protecting personal data information. OPCRDA is protected from unauthorised access, damage or loss, and maintained with international industry level security.OPCA employees are regularly trained on data protection and security, including compulsory annual certified training. We conduct regular checks and audits to ensure compliance with theAustralia Privacy Act.
HOW TO OPT OUT OF DATA SHARING WITH OPCRDA
Individuals have the right to opt out of the sharing of their patient health information by their GP practice or specialist practice. Opting out of sharing your health information will not affect the direct care that you receive.If you do not wish for your data to be collected, processed or used for research including OPCRDA, please contact and inform your GP or specialist practice.