gLOSSARY OF DATABASES
Check the key details of registries commonly used in OPUS data linkages.
|Name of Database||Description||Size||Custodian||Rules of Engagement/ Collaboration||Ethics Requirements||Cost||Tips for Database Use (eg. Difficult consent process)|
|Institute for clinical evaluation studies (ICES) - Canada Ontario||Ontario's health-related data, including population-based health surveys, anonymous patient records, and clinical and administrative databases.||Population of Ontario 14+ million||Institute for clinical evaluation studies (ICES)||Must apply to ICES with a data application form. Then a call is scheduled to discuss the feasibility of your project with an ICES analyst.||If cross country analysis is being undertaken Ethics approval form home institution is fine. If looking independently at Canadian data a local (Canadian) ethics committee needs to approve.||Recent application was costed at $8,000 Canadian dollars. Cost is mostly made up of analyst time. Unlikely to vary too much based on data set size there is just the one off cost of data extraction.||Easy process. ICES are keen to make their datasets available as it is a revenue stream for the institution. Most pharmaceutical data are only recorded for seniors aged over 65 years.|
|Multi-agency data integration project (MADIP)||MADIP is a partnership among Australian Government agencies to combine information on healthcare, education, government payments, personal income tax, and the Census to create a comprehensive picture of Australia over time.||Australian Population||Australian Bureau of Statistics||To use MADIP you need to submit a project proposal and complete a half a day ABS Data Lab training session before accessing the data.||Home ethics institution (assume) maybe more.||Not sure - Cost not outlined online.||Yet to use. MADIP has become available to researchers in 2018. ABS has been working on the concept since 2015.|
|NPS MedicineInsight||Dataset consisting of routinely collected general practice data from over 600 general practices across Australia||Over 3.8 million "active" patients (ie attended general practice at least two times in the last 3 years)||NPS MedicineWise||The Department of General Practice has developed a relationship with NPS MedicineWise and expertise in interpretation of the dataset.||Ethics approval required from an NHMRC recognised ethics committee. Approval is also required from the MedicineInsight Data Governance Committee before data is released.||Dependent on project. Cost provided based on completion of data access enquiry form; can be costly.||Suggest contacting MedicineInsight early for discussion of research proposal and quote.|
|Patron||Dataset consisting of routinely collected general practice data from electronic medical records in Victoria||Currently being established - aiming for 50 general practices by end 2018||Department of General Practice, University of Melbourne||The Department of General Practice is developing this dataset; currently limited to projects involving researchers from the Department of General Practice.||Ethics approval required from an NHMRC recognised ethics committee. Approval is also required from the Data for Decisions Data Governance Committee, Department of General Practice before data is released.||Cost is on cost-recovery basis for academic projects.||New dataset. Involvement of GP academics required to assist with interpretation of data.|
|St. Vincent's Melbourne Arthroplasty (SMART) Outcomes Registry||SMART is a clinical registry based at St. Vincent's Hospital that houses clinical and patient reported outcome data, in more than 9,500 patients who have undergone elective lower limb arthroplasty. Over 100,000 patient pain, function and quality of life surveys are recorded in the Registry which plays an important role in identifying novel and modifiable factors including patient, bone and joint structural, and surgical factors that affect the outcomes of surgery.||9,700 + patients (Grows by approximately 700 cases per year)||Michelle Dowsey, Peter Choong||See attached Appendix A & B||Research projects must be approved by a Human Research Ethics Committee||Nil (Cost of ethics submission - available on the St. Vincent's Heath Australia Website)||Collaborative projects only considered|