The October 21, 2016 conference was the first of its kind and brought together UCP National staff, PCORI Staff, national experts and members of the community to discuss health-related and other issues impacting people with disabilities nationally and at regional and local levels.
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. Here is the link for more information: http://mylifewithoutlimits.org/speak-for-yourself/
This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award.