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People with Aphasia Can Help Make Research Happen
Have you ever wondered if yoga would help you live with aphasia? Or if life coaching would improve quality of life? Or if training people with videos would help them understand aphasia better?
These are a few of the questions that are being asked by Project BRIDGE research teams. Each research team includes people with aphasia, family members, clinicians, and researchers. The teams were formed in a very special way.
Dr. Alejandro Brice, at the University of South Florida, and Dr. Jackie Hinckley, at Nova Southeastern University, received funding from the Patient-Centered Outcomes Research Institute (PCORI) Engagement Awards. The money paid for training and a conference. The first step was for everybody to get information. Researchers need information about the best way to help people with aphasia participate. People with aphasia need information about how research is done. Everybody went through three webinars that gave them the information they needed. You can watch the webinars.
Everyone who had completed the webinars came together for a two-day meeting. The meeting was held in October 2018 in Clearwater, Florida. A total of 102 people came to the meeting. By the end of the meeting, we formed 11 research teams. The research teams are all working on their projects. You can read or hear more about the conference. Project BRIDGE is special because we have a Project Advisory Team. The Advisory Team includes people with aphasia, family members, researchers, and clinicians. You can see the list of people on our Advisory Team.
Research that is planned with people with aphasia and their family members is different than research that is planned by researchers alone. The research topic might be different. The measurements might be different. The way the information is shared might be different.
Here is what people with aphasia can do when they work with researchers:
- Prioritize which research questions or projects are most important to patients
- Ask new or different research questions
- Help researchers understand what measurements are most important
- Help researchers make sure that information about the research is
understandable to patients
- Identify the best places to publish or share research findings, so patients can
know about it.
If you want to find out more, you can contact Project BRIDGE at [email protected]