Elevating Voices of Lived Experience in Inclusive Community Based Research
Project Description:
The Wyoming Institute for Disabilities in collaboration with the Wyoming Governors Council and the Equality State Research Network Advisory Council proposes to apply for Eugene Washington PCORI Engagement Award: Stakeholder Convening Support. The current proposal will leverage existing infrastructure and build upon community based participatory research (CBPR) design to improve and address barriers for meaningful engagement, inclusion, and participation of individuals with disabilities in PCOR/CER. The project will convene key stakeholders including individuals with intellectual and developmental disabilities (IDD) and their families to promote discussion of the barriers and facilitators to conducting research in rural Wyoming as well as research topics, questions and engagement plans for patient centered outcomes research (PCOR) / comparative effectiveness research (CER).
In the Summer of 2024, WIND through the ESRN and in partnership with the Wyoming Governor's Council on Developmental Disabilities will;
Conduct a stake analysis to determine stakeholder influence on factors that limit or facilitate meaningful contributions to full inclusion of those with IDD in CBPR/PCOR/CER.
Convene a large group of self-advocates with IDD, their care providers and other stakeholders to who were identified in the stake analysis, facilitate discussion and dissemination of the journey mapping results from the project titled "Experiences of Individuals with intellectual and developmental disabilities (IDD) in the research process (EASC-IDD-00312). This journey map describes the real-world experiences of those with IDD, direct support professionals and researchers while including those with IDD in research and will be used in (3) below.
We will use the Nominal Group Technique (NGT) to guide a discussion with all stakeholders about the barriers and facilitators to inclusion of those with IDD in research that were identified in the Journey Mapping process and how those factors align with the stake analysis results.
Based on the discussion in (3) above, we will develop a research agenda for IDD inclusions in research that prioritizes alignment of research interests/goals with stake-analysis results. That is, research priorities will be based on which stakeholders have the power and are willing to address barriers to inclusions of those with IDD in research. For example, IRB members may be more able to facilitate improvement of research training and compliance, whereas direct support providers and family members may be more able to facilitate outreach to those with IDD. Included with this research agenda will be an action plan to guide the next steps related to enacting the research agenda. This plan will include key stakeholders, their power to address those issues, specific actions and timelines.
Keyword(s):
Mental/Behavioral Health – Autism, Clinical Care, Developmental Disabilities, Health Equity, Life Course Approach, Maternal Health – General, Mental/Behavioral Health – General , Preventive Services, Social Determinants of Health, Children, Adolescents, and Young Adults with Special Health Care Needs
Core Function(s):
Performing Research or Evaluation
Area of Emphasis
Health-Related Activities
Target Audience:
Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities, Legislators/Policy Makers
Unserved or Under-served Populations:
Geographic Areas, Rural/Remote
Primary Target Audience Geographic Descriptor:
State
COVID-19 Related Data:
N/A
