Background: People with intellectual and/or developmental disabilities (IDD) have historically been unequal partners in IDD research. Mistreatment, disenfranchisement, and misunderstanding of the IDD community created a culture of mistrust among people with IDD and the wider community. As civil rights activists began to advocate for the IDD community, institutions were closed, and practices evolved. Despite this progress, the needs of people with IDD to understand and engage in health care and health research were inadequately addressed and understood.
Proposed Solution to the Problem: Project CONNECT seeks to bridge gaps in understanding, empowerment, and empathy endemic to IDD research by creating a Research Community of Praxis through a series of Project ECHO sessions and the development of a shared language and vision for the future of IDD research. Collectively, this Community (consisting of researchers, individuals with lived experience, policy makers, advocates, and clinicians) will contribute to the design of IDD focused Patient-Centered Outcomes Research (PCOR)/Comparative Clinical Effective Research (CER) and promote the use of Community-Based Participatory Action Research (CBPAR).
Objectives: Project CONNECT is the first step towards building a Research Community of Praxis. Primary objectives include: recruiting a diverse cohort of individuals with varying research skills and lived experiences, including individuals with IDD and/or their families; development and implementation of a Project ECHO to expand participants’ awareness, examine implicit biases, and increase skills and confidence to engage in IDD focused PCOR/CER using a CBPAR framework; creating and disseminating accessible and useful products that can inform future IDD research; and increasing connection between partners.
Activities: Project CONNECT consists of 5 strategies: (1) recruit and retain a diverse population of partners with lived experience and stakeholder partners; (2) develop and facilitate meaningful relationships between participants through small group membership in Project ECHO teams; (3) build PCOR/CER and CBPAR capacity for all participants through didactic and experiential training and opportunities for feedback; (4) capture knowledge of all participants through the creation of a Glossary of Terms and Principles of Engagement in IDD Research; and (5) incorporate regular participant feedback as a continuous quality improvement measure.
Projected Outcomes and Outputs: Products/outputs developed will include: (1) recruitment materials; (2) Project ECHO curriculum; (3) IDD Research Glossary of Terms; and (4) Principles of Engagement in IDD Research.
In the short-term (during the project period), engagement in Project CONNECT will increase participants’ meaningful relationships and increase understanding of PCOR/CER and CBPAR.
In the medium term (0-2 years post-project period), participants will gain insight and increase confidence to engage with other stakeholders and within a research paradigm and promote PCOR/CER and CBPAR.
Ultimately, Project CONNECT will increase partners with lived experiences’ competencies and skills to positively influence their engagement with clinical care providers. Professional members’ increased competencies will benefit their practice and influence health and policy systems. This engagement will both drive and result in research findings that are meaningful to people with IDD and their caregivers.
Patient and Stakeholder Engagement Plan: Through a recruitment process, approximately 20 partners with lived experience and 15 stakeholder partners will be invited to participate in Project CONNECT. Partners will participate in the 7 ECHO sessions and create a research community of practices and products to drive future IDD PCOR/CER and encourage the use of a CBPAR framework. All sessions but the final session will follow a similar format, offering opportunities for insight and reflections. Participants will be asked to provide feedback after each module. This data will be used to refine Project CONNECT.
Project Collaborators: Maine Developmental Disabilities Council, Partnerships For Health, and Maine Primary Care Association.