Building Trustworthiness in PCORnet

In 2016, Genetic Alliance convened a vibrant and dynamic Building Trustworthiness in PCORnet two-day meeting with support from PCORI. Diverse stakeholders came together from PCORnet networks and other communities, including individuals and patients; parents and caregivers; clinicians; advocates and activists; citizen scientists; and experts in research, policy, public health, community outreach, and engagement. After two days of productive dialogue, meeting participants developed seminal recommendations for PCORnet.

Recommendations from the PCORnet Community

• Inculcate cultural humility
• Recognize and engage diversity
• Transparency around data, budget, privacy policy, projects
• Design governance built around citizens
• Train and support community researchers so that they can do PCOR
• Common collaborative environment with a wiki and sharing opportunities
• Learn from best practices/lessons
• Support dissemination throughout research process
• Involve patients/participants more deeply in IRBs
• Provide substantial budget for engagement and dissemination
• Support resources for clinicians to engage in research

Meeting Materials

• Read the Meeting Summary Report
• Watch the Webcast Recordings
• Visit PCORnet for more information