Background: People should have a voice in planning the research that will affect their health. It is more difficult to participate in research planning if you have a communication disability like aphasia. Project BRIDGE (2017 – 2019) showed training researchers, clinicians, people with aphasia, and their families can help. After being trained in research and collaboration methods, 102 individuals attended a two-day meeting in October 2018. At the meeting, the project team formed 11 research teams that included people with communication disabilities like aphasia, family members, clinicians, and researchers working collaboratively. Everyone who attended the meeting was very excited about doing this kind of research. The team wants to know how to get even more people involved. The team also wants to share what it has learned with the public.
Proposed Solution to the Problem: The project team wants to create a research incubator network. The network will have a hub and four regional centers around the United States. Each of these centers will train people who are interested in collaborative research that includes people with communication disabilities. The work will also be on a website. Anyone can see and use the tools the team develops.
Objectives: The project’s long-term goal is to double the number of collaborative research teams working on issues related to communication disabilities. The team also wants to create a network that will help support research teams that are doing this kind of work.
Activities: The project team will create a website with resources and tools to share. The website will also be where people who are interested in this work can connect with the team. They can sign up to get emails and a newsletter. The team will train 48 fellows who are interested in this kind of work. The fellows can be people with communication disabilities, family members, clinicians, or researchers.
Outcomes and Outputs (projected): The project team will have different kinds of meetings and will share the minutes of those meetings on its website. People can also read the newsletter and find out about work around the country. The team will present at six conferences and publish at least two papers. The team will share the work of its research teams.
Patient and Stakeholder Engagement Plan: The project advisory team includes people with communication disabilities, researchers, clinicians, and family members. The team came up with the idea of regional centers. People with communication disabilities and their family members can participate at one of the regional centers or contribute to a research team.
Project Collaborators: The hub of the network is located at Nova Southeastern University in Ft. Lauderdale, Florida. The regional centers will be at the University of Nevada in Reno, Central Michigan University in Mt. Pleasant, Michigan, University of Central Florida in Orlando, Florida, and the Adler Aphasia Center in Maywood, New Jersey.
Project Resource: Training Pathway Booklet