The Participant-Driven Research Community (PDRC) Learning Network (LN) aims to build upon goals related to patient and stakeholder engagement in research as articulated in PCORI’s Strategic Plan by providing a setting for PDRCs – defined as patient or community-led organizations, groups, or networks that engage in the research process – to collaborate with one another and workshop best practices and strategies for ensuring network sustainability and addressing commonly-faced challenges.
The PDRC LN organizes and convenes workgroups which serve as forums for sharing learnings across eight PDRCs on three topics of special interest:
- Improving representativeness in research governance and participation
- Elaborating on sustainable PDRC business models, and
- Improving effectiveness of digitally-based engagement efforts
Ultimately, these workgroups will extract generalizable findings to inform the broader PDRC landscape and advance the field of engagement science as a whole.
This project began in August 2019 and will conclude in May 2021. LN activities include monthly calls, monthly online seminars that include external experts, bimonthly workgroup meetings, and annual LN meetings. Key outputs of these collaborative convenings include reports, issue briefs, and social media toolkits on improving representativeness in research governance and using digital engagement strategies to return value to research participants.