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Building Trustworthiness in PCORnet

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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


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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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