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.
This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.
Speak for Yourself: “What Matters to You?” Video (Captioned)
Speak for Yourself presents “What Matters to You?: A Guide to Patient-Centered Research for People With Disabilities.” (Webinar)
Read More on how you can “Speak for Yourself”:
- Find out more on Self-Advocacy and Health Research
- Read More on Redefining the Role of People with Disabilities in Health Research
- Have a story about your health experiences you’d like to share? Tell us on UCP’s Facebook or Twitter!
- Be a part of a “Speak for Yourself Twitter chat!
- Stay connected to UCP on social media! Follow us on Twitter and “Like” us on Facebook!
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.