NAA Project: People living with aphasia help lead future research
Every day, families ask important questions like:
“What’s the best way to help my wife with her speech?”
“How can I help my husband reconnect with his friends?”
Now, there’s a new project being led by the NAA with funding support from PCORI that puts your voices at the center of the conversation.
A Project that Listens – And Acts
This project brings together:
- People living with aphasia
- Family members, caregivers and loved ones
- Professionals like therapists, researchers, physicians and advocates
Together, they will build a shared list of what matters most when living with aphasia. It’s called a Patient-Centered Core Impact Set. It may sound complex, but the idea is simple:
People with aphasia should help decide what’s most important about living with it. Together, we’ll learn more about its real impacts and to help drive research that focuses on what truly matters.
What’s the goal?
The main goal is to create a prioritized list of the most important impacts and challenges of living with aphasia. People living with aphasia will be at the center of every aspect including developing and prioritizing the list of impacts. This list will help guide future research, programming, and advocacy efforts. This process is called creating a Patient-Centered Core Impact Set (PC-CIS).
Why This Matters
Many research studies focus on speech and language — and that’s important. But people with aphasia also experience things like:
- Feeling left out of conversations
- Trouble returning to work or hobbies
- Emotional health and relationships
This project asks: What do people with aphasia want researchers to focus on?
Instead of guessing, we’re going to ask — and listen.
The NAA’s mission includes “foster(ing) research that impacts the lives of people with aphasia.” This project is a powerful way to do exactly that.
What’s next?
Here’s what to look for in the next few years:
- Check out our new project webpage for more information, progress on the project and opportunities to be involved
- A published list of prioritized impacts of living with aphasia
- A roadmap to guide research, advocacy, and programming
For People with Aphasia: Your experiences matter. Your voices will help shape future research, programming and advocacy.
For Professionals: This is an opportunity to align research with what people living with aphasia say they need most.
A future shaped by real voices
This project is a big step towards making sure that people living with aphasia are not just a part of the conversation, but leading it. By focusing on what really matters, we can build a better future together.
This project was funded through a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EASO-42247)
