St. Louis Children and Youth Services

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UCP, in partnership with the Patient-Centered Outcomes Research Institute (PCORI), is excited to launch Speak for Yourself, a movement to build a network of individuals with disabilities who are trained and empowered to become directly involved in the research that improves their health outcomes.

Relevant and well-informed patient-centered clinical research is essential to advancing healthcare access, quality, and choice for individuals with disabilities. A patient-centered approach to research that encourages individuals with disabilities to provide input on the gaps in evidence, best practices, and direction of disability-focused research is central to the success of such research.

Individuals with disabilities have expressed the desire to be a part of such a movement to improve their lives, yet to-date, only a small segment have been able to become meaningfully involved. Too often those with the potential to be most impacted by disability-focused research aren’t aware of what research is occurring or how to get involved. Members of the research community have also expressed the desire for more individuals with disabilities to become centrally involved with their work, and seek better relationships with networks of knowledgeable and engaged disability-focused research participants.

Follow this link to learn more about disability and health-related research. The first survey is now closed. Please check back for more information about the next survey in the coming weeks!

This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.