Maine Developmental Disabilities Council

Project CONNECT aspires to create a research community of praxis where critical reflections and courageous conversations are encouraged and where all participants can equitably engage in I/DD research related to clinical care delivery, coordination, and access through the lens of the provider, parent/caregiver, and patient triad. Project CONNECT is designed around four interconnected strategies.

Diversity of Experience: Project CONNECT is a project about people. It’s about recruiting the right people, helping to ease barriers to participation, and maintaining engagement. Approximately 20 partners with lived experience (person with I/DD, family, and caregivers0 and 15 stakeholder partners (researchers, medical professionals, policymakers, etc.) will commit to participating in Project CONNECT.

Meaningful Relations: I/DD and stakeholder partners will be divided into small groups of approximately 5 people with a faculty member serving as host. These small groups will remain constant throughout the Project which will allow participants to gain a better understanding of each other’s interpersonal and communication styles. The faculty host will lead small group discussions inviting participants to engage with one another.

Build Capacity: The faculty will develop a curriculum detailing the process and content for each of the seven didactic sessions. Each session will focus on a different research topic. Each session will begin with a small group exercise that will serve as an icebreaker.  After the large group didactic training, the assigned faculty member will lead their small group in discussions. Homework assignments will invite participants to engage with one another in fun ways that solidify the session’s educational focus and provides an opportunity to interact outside of the training sessions.

Capture Knowledge: In addition to the curriculum for the seven didactic sessions, two additional products will be created – a Glossary of Terms and Principles of Engagement in I/DD Research. 

Project CONNECT Updates: Under construction

Glossary of Terms:  An effective part of communication is the creation of a shared lexicon to ensure participants are all speaking on the same (or at least similar) language. The Glossary of Terms will be a compilation of terms that have been identified in small group discussions as confusing, complex, and/or having multiple meanings.

 Watch Session Videos here.

Project CONNECT is funded by the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EACB-24308)