After having worked on three PCORI Engagement Awards, the first shortly after Sky Collins began her volunteer work with the rare disease community and seven years prior to her own daughter being diagnosed with an ultra-rare disease, it became apparent to her that PCORI's mission (helping people make informed healthcare decisions) aligned with her own work both within the rare disease community and beyond. Serving on the boards of both a local free clinic and a rare disease non-profit organization, she learned that PCOR and allowing patient voices to be heard are vital. As a woman of mixed race, now raising a daughter with a rare disease, and working with a very diverse patient community in local free clinic work, Sky has seen an undeniable need for more diversity and inclusion in PCOR. While her professional work is not in patient advocacy—she does work in a field that is recognizing how critical it is to include the voice of underserved populations and her work focuses on listening to those voices and experiences. She is a graduate of the Oklahoma Partners in Policymaking program and devotes her time to advocating for Oklahomans with disabilities and their caregivers. Within this work, she also serves on local public school committees to engage the community on inclusive healthcare initiatives. Sky is excited to serve as a PCORI Ambassador to spread the word about the importance of stakeholder-engaged research.
Involvement with PCORI
Project Coordinator/Manager - Engagement Award: Capacity Building from a RARE Perspective – Project Lead: Andrea Taylor
Working Group Member - Engagement Award: Capacity Building from a RARE Perspective – Project Lead: Andrea Taylor
Working Group Member - Engagement Award: Arterial Tortuosity Syndrome PCOR/CER Summit Series – Project Lead: Andrea Taylor