NAA Has Been Selected for Patient-Centered Outcomes Research Institute Funding

National Aphasia Association has been awarded funding for a project to establish and disseminate a clear set of research priorities based on the experiences and needs of people living with aphasia.

This project was funded through a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASO-42247).

Project Goals

  • Create an aphasia-friendly webpage
  • Create a core impact set for stroke-related aphasia
    • A prioritized list developed by people with aphasia and their caregivers about the impact of aphasia on their lives.
    • Collaborate with researchers and clinicians on the core impact set.
  • Develop a roadmap to guide future research
  • Share project results widely

FAQ

    • People living with aphasia will make a list of what impacts them the most about living with aphasia. This is different than the usual way in which researchers and clinicians decide what to focus on.
    • People living with aphasia will prioritize a list of what most impacts their health and daily activities.
    • Then, researchers and clinicians will have input based on the impacts prioritized by those living with aphasia.
    • Lastly, those living with aphasia, researchers, and clinicians will come together to develop a Patient-Centered – Core Impact Set for Aphasia in the US.
    • NAA website
    • NAA email
    • NAA live and online programs
    • Presentations
    • Patient-related publications
    • Clinician publications
    • Professional journals
    • Share with organizations that support researchers
    • NAA will serve as a resource for researchers
    • NAA will serve as a resource for those living with aphasia who want to participate in research
    • NAA will help to drive research to focus on the core impact set developed by those living with aphasia
    • NAA will support research that focuses on the core impact set
    • People living with aphasia – those with aphasia, their families, their caregivers, their supporters and friends
    • NAA
    • Leadership team comprised of individuals from NAA, researchers and people living with aphasia
    • Advisory team comprised of aphasia organizations, programs and centers
    • Researchers
    • Clinicians such as speech pathologists, doctors, nurses, occupational therapists, physical therapists, social workers and case managers

Leadership Team

Maura English Silverman
Maura English Silverman
Project Lead
Jacqueline Hinckley
Jacqueline Hinckley
Co-Project Lead
Swathi Kiran
Swathi Kiran
Co-Project Lead
Kim Irby
Kim Irby
Project Manager
Alison Betty
Alison Betty
Team Member
Angie Cauthorn
Angie Cauthorn
Team Member
Doreen Mendez
Doreen Mendez
Team Member
Steve Parnell
Steve Parnell
Team Member