Patient Advisors Network (PAN) PGHD Principles
September 30, 2019
This document is a result of collaboration between BeACCoN and PAN which has been commissioned to identify and describe principles for PGHD through the lens of patients and caregivers. We hope these principles will serve to inform and guide any changes in policy, practice and PGHD tool design to protect against misuse and support beneficial use. This document has been prepared for BeACCoN and its stakeholders: Patients and caregivers, developers and innovators, healthcare practitioners, policy makers and researchers.
Patient Generated Data 2.0 Workshop
April 15, 2019
This meeting brought together about 35 patients, researchers, developers, and policymakers to discuss the patient-generated data (PGD) initiative in Ontario (Appendix A). This is the follow-up to a workshop about patient-generated data in September 2018 hosted by Better Access and Care for Complex Needs (BeACCoN) and the Patient Advisors Network (PAN), which highlighted priorities and challenges around PGD.
Understanding the Collective Impact of SPOR in Ontario
January 21, 2019
Hosted by BeACCoN, a workshop was held at Women’s College Hospital to: understand the collective impact to-date of the SPOR enterprise in Ontario; learn from the successes and challenges; and to coordinate next steps for the future.
This meeting aimed to determine how the SPOR Enterprise has enabled improved health outcomes and enhanced health care experience for patients through integration of evidence at all levels of the health care system. It also aimed to examine the collective impact to date of Patient Oriented Research and how we can work together to enable greater collective impact in Ontario.