Enabling Research by Improving Access to Data
e-Health ePoster Library. Filsinger B. Jun 5, 2017; 167107; EP03.01
Brooke Filsinger
Brooke Filsinger
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Purpose/Objectives: CCO collects and manages one of the most comprehensive healthcare data sets in Canada. The data is used to support research and inform decision-making in Ontario's health system. Data and analytics are integral to meeting the growing demand for greater health system accountability, better health outcomes and improved patient experience. One of CCO’s strategic priorities is to support evidence and knowledge generation. To support the increased demand for data to support research, CCO’s Data Disclosure Team worked to increase the capacity to support researchers both internal and external to CCO, while still meeting CCO’s privacy and legal responsibilities.

Methodology/Approach: Supporting researchers in their data needs is a resource-intensive process. Support for a typical research data request is required from coordinators, research associates, privacy specialists, as well as senior management across the organization. In order to continue supporting evidence and knowledge generation and ensure the delivery of quality service for data requests, the Data Disclosure Team focused on improvements in four areas: Engagement with stakeholders; Governance; Streamlined processes; and Pilot of a cost recovery model.

Finding/Results: The team began by focusing on quick wins by improving stakeholder communications at first contact, improving online information, and clarifying roles and responsibilities in the process. Subsequently, a multi-phased improvement plan was implemented, including: Improvement of communication tools (online; email; forms) to ensure researchers were equipped with the information necessary to request data, as well as to ensure the best quality data was disclosed; Launch of the Data Disclosure Subcommittee to oversee the decision-making and issues in a complex process; Process improvements, beginning with detailed process mapping to identify streamlining opportunities, monitored through weekly and monthly performance reports; and Launch of the pilot year of the cost recovery model to support the increasing resource requirements of data disclosure at CCO.

Conclusion/Implications/Recommendations: In the past year, CCO’s Data Disclosure Team has worked with researchers across the province to help address their research questions. The most frequent research topics include: Cancer Prevention; Cancer Diagnosis; Cancer Treatments; and Access to Care. A quarterly report to CCO’s executive team has demonstrated sustained improvements over 6 quarters. This translates to an improved experience for researchers through: Better understanding of the steps and requirements to access data for research purposes; Improved quality of data disclosed; and More timely access to data.

140 Character Summary: To meet the increased demand for data for research purposes, CCO’s Data Disclosure Team worked to streamline and improve processes to support researchers across ON.
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