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).

Click here to learn more!

We had the opportunity to share information about the Aphasia Patient-Centered Core Impact at the NAA Ask the Expert and After the Experts Talks.

Core Impacts After the Expert overview slides

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

Core Impact Study: Year One Highlights

We are excited to share the progress we’ve made since the Core Impact Study began. This important project is helping us better understand the real-life impacts of aphasia—by listening directly to people with aphasia, their families, and care teams.

Key Accomplishments

  • June 2025: The National Aphasia Association was awarded funding for the Core Impact
    Study by the Patient-Centered Outcomes Research Institute (PCORI).
  • 6 Leadership Team Meetings Completed: Our Core Impact Leadership Team has met regularly to guide the project and keep it on track.
  • September 2025 – Environmental Scan Completed: We reviewed existing research and media related to aphasia impacts. We found 31 different impacts of living with aphasia already discussed in the literature and public stories.
  • October 2025 – Advisory Board Formed: Our diverse Advisory Board includes people with aphasia, care partners,
    clinicians, and researchers. They help guide the project and keep it grounded in lived experience.
  • Convening #1 in Progress: We are currently hearing directly from people living with aphasia about how aphasia affects their lives. These conversations will help shape the most important research questions.

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

    core impact project. Identifying issues, influencing research, and Real-life experiences lead to improving care.

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
woman caregiver giving a side hug to an elderly woman, , National Aphasia Association