The Patient-Oriented Research Database and Interactive Map project developed from two separate initiatives: the Patient Council’s Mapping Patient-Oriented Research in BC project and the Training Capacity Development (TCD) working group’s POR Registry summer student project.
In Fall 2019 a group of patient partners presented to management a proposal for a patient-initiated project called the Mapping Patient-Oriented Research in BC. The purpose behind this project was to increase transparency about POR projects happening in BC and create opportunities for patients and other health research stakeholders to connect with other POR teams. It could also serve as a useful resource to help reduce duplication, identify potential synergies or points of collaboration, and potentially aid in measuring the effectiveness of patient engagement in POR. Most importantly however, this tool was requested by patients for patients.
Separately, in March 2020 the BC SUPPORT Unit’s Training and Capacity Development (TCD) Working Group identified the need for a “concise easy-to-use tool to help members of the public better understand what organizations and institutions engage patients, caregivers or members of the public in patient-oriented research”. Based on this need the TCD Working Group initiated a project to hire a summer student to create a “BC Registry of Patient-Oriented Research Organizations”.
In consultation with the TCD and PE Leads and in view of the similarities between these projects a decision was made to combine them as the POR Registry project. This project is now officially referred to as the POR Database and Mapping Project, (herein referred to as the POR Database for ease), also known as REACH BC Phase 3.
The closing report for this project is included here as a resource.