POPLAR strives to ensure secure access to data for uses consistent with POPLAR’s mission, while maximizing opportunities for ethical research that benefits patients and the public. POPLAR is a collaboration of seven Practice Based Learning Networks, funded through INSPIRE-PHC; our guidelines adhere to and comply with University of Toronto research policies and are representative of research policies at Ontario Academic institutions.
POPLAR has developed a framework and guiding principles to access POPLAR data. All access and use of data will be governed by privacy legislation and the POPLAR information governance framework. The goal of this framework is to facilitate a transparent process to access provincial Practice Based Learning and Research Network (PBLRN) data and ensure privacy, security and risk are addressed as well as any restrictions on use.
The POPLAR Program is governed by its committees:
The POPLAR Steering Committee makes strategic and “high level” decisions. These include review and approval of strategic recommendations submitted by other committees. This can include, for example, directions such as new data partnerships and linkages. Voting members of POPLAR’s Steering Committee include one representative of each contributing Network, a representative of INSPIRE-PHC, and two Patient (co-Chairs of the Patient Advisory Committee). Administratively, the POPLAR Executive Committee, composed of the POPLAR Lead, Steering Chair, Steering Chair-Elect, and the POPLAR Program Manager, implements strategic decisions of the Steering Committee.
The POPLAR Advisory Board offers comment and advice to the POPLAR Steering Committee on the overall strategic direction and progress of the POPLAR Network. They exchange ideas and information while ensuring the confidentiality of the research and any other information shared within the meetings, advising on project initiatives and strategic partnerships.
The POPLAR Patient Advisory Committee (PAC) is a Patient Partner-led committee comprised of patients invited through each of the PBLRNs from across Ontario. The PAC represents and articulates patient needs, expectations, and experiences to the POPLAR leadership, committees, and other stakeholders.
The POPLAR Data Access & Regulatory Compliance Committee (DARCC) reviews and approves data access for Research projects. It may provide strategic recommendations to the Steering Committee. Administratively, the POPLAR Program Manager is responsible for ensuring that necessary documentation, including confidentiality forms, is completed.
The POPLAR Data & Information Management Committee is responsible for operational management of data, including standardization of data processing. Administratively, the POPLAR IT Specialist is responsible for operationalizing and overseeing the ongoing management of data security.
The Indigenous Governance and Sovereignty Working Group reviews and makes decisions on all research projects where there is or might be identification of First Nations communities or Indigenous organizations (via postal code, census subdivision, on-reserve practice location, or other granular geographic unit).
The Governance Working Group reviews decision making and governance processes for all committees and provides recommendations back to Committees.
The POPLAR Stakeholder Engagement Committee (SEC) advises Steering on strategies to promote stakeholder interest in POPLAR. Its operational roles include implementing engagement strategies and activities, such as overseeing the generation of standardized communication materials across POPLAR and their adaptation to fit regional context. The goals include growing membership for Networks and enhancing the sustainability of POPLAR and its constituent PBLNs.
The POPLAR Clinical Research Committee's mandate is to support POPLAR's Collaborative Clinical Research activities. It aims to engage primary care clinics within our networks so they are prepared and supported when deciding to participate in collaborative clinical research projects. The committee oversees the processes for engagement and decisions on supporting clinical research project requests.
POPLAR’s Information Governance Operational Framework outlines how the data is accessed and used. It provides a measure of autonomy for regional / sectoral Networks, enhancing regional and sectoral relevance, while allowing centralized projects and processes to occur. Networks can opt out of province-wide secondary use data projects if there is no Industry funding. All other projects, including those with Industry funding, require opt-in by involved Networks, in addition to all other permissions including project-specific REB approval.
The Data Controller for the POPLAR System and Data Platform will be Queen's University; Data Transfer Agreements for data coming into POPLAR will be signed on behalf of Queen's University.