Real World Comparative Data (RWCD) is de-identified clinical data collected during the delivery of health care. Broadly, the data represents what happens in reality, outside of tightly controlled clinical trial settings.
The analysis of RWCD data sets clearly has the ability to inform decisions made by health care providers, researchers, administrators, life science companies, and nearly every stakeholder involved in health care. Given the ubiquitous nature of electronic health data collection (e.g. via Electronic Medical Records), aggregation and analysis of RWCD is rapidly becoming a focus of nearly every area of health care.
At the heart of this analysis is the patient. Clearly, harnessing the power of RWCD has the potential to improve quality of health delivery, identify care gaps, and inform future directions based on clinical need. However, the data collected must be very high quality and the questions asked must be appropriate, in order to improve outcomes.
The ORA has a long history of visionary work in clinical informatics. A new project aiming to develop a standalone registry to collect RWCD in Rheumatology across Ontario represents a potential premiere program of the ORA. The Ontario Rheumatic Diseases Evaluation Registry (ORDER) has a vision to improve the quality of health care for patients with rheumatic diseases in Ontario by leveraging the use of RWCD collected by ORA members. ORDER will do so by providing analysis and reporting of the de-identified patient-level data collected back to ORA members, including at the point of care.
Before proceeding, a critical step being taken is the development of a forward-looking and transparent data governance framework. Our goal is to ensure that this project indelibly places the best interests of Rheumatology patients and ORA members first. This is being achieved with a set of core guiding principles and rules of engagement that underpin the mission and vision of the ORDER project.
As with all ORA works, the ORDER project is an ORA member-driven initiative. We invite and greatly appreciate the feedback of all ORA members as we develop the data governance framework for ORDER over the summer of 2017. Please send us your thoughts and ideas. If you would like to be involved in the design and review of the governance framework, or other areas of the project, please contact the ORA directly at firstname.lastname@example.org.