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

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Stakeholder Types
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

Send a request to connect with Sky Collins

PCORI would like to facilitate connections among PCORI Ambassadors and between PCORI Ambassadors and other stakeholders to partner on research projects, engagement initiatives, speaking opportunities and other patient-centered research activities. If you would like to connect with the above-listed PCORI Ambassador, please send a request using the form below.
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