National Patient-Centered Clinical Research Network Coordinating Center
Genetic Alliance sits at the nexus of the most current and influential research and consortium efforts, most notably through involvement in the National Patient-Centered Outcomes Research Network (PCORnet). Since 2015, Genetic Alliance has served as a key part of the PCORnet Coordinating Center and led efforts to:
- Coordinate, convene, and empower the Patient-Powered Research Networks (PPRNs) of PCORnet;
- Manage the Commons, a platform designed to enable participants to share resources, engage in dialogue, and learn from one another;
- Elevate the voice of participants to challenge the status quo around what it means for research outcomes to suit community needs;
- Implement and assess people-centered activities; and,
- Establish methods to make it easier for people in the healthcare system to access and share their data.
Key Accomplishments
- Convened hundreds of collaborative meetings, workshops, webinars, and conference calls
- Conducted an engagement assessment project analyzing engagement strategies and activities from all 35 PCORnet networks to identify best practices, challenges, and lessons learned
- Shared public-facing, consumer-appropriate lay materials to improve the capacity of real people understanding and contributing to the participant-driven research ecosystem
- Developed a suite of tools to enable communities to better plan, implement, and measure engagement activities
- Supported all 20 PPRNs through the process of joining and executing SMART IRB, a single IRB platform, for a multi-site research study
- Led data pilots among PPRNs to support EHR, mHealth, and PopMedNet integration with participant registries to advance participant-driven research efforts
- Partnered with the PPRNs and other participant-driven research organizations to grow collective people-centered research power and further understand the role and value of the advocacy community in the larger research ecosystem
- In 2016, convened a vibrant and dynamic Building Trustworthiness in PCORnet two-day meeting with support from PCORI
