Project Description:
Background: Institutional requirements for training of individuals engaged in human subjects research pose a barrier to PCOR teams inclusive of patient stakeholders with intellectual and developmental disabilities (IDD) affecting cognition. Existing trainings are inaccessible to these patient stakeholders due to high literacy, working memory, and abstract thinking demands. Further, they are not tailored to the specific roles of patient stakeholders with IDD. As a result, people with IDD are excluded from full engagement in PCOR or subject to training that feels overwhelming and does not facilitate learning.
Objectives: (a) Identify research ethics training learning outcomes and content tailored to the roles of PCOR/CER patient stakeholders with IDD; (b) develop a cognitively accessible research ethics training for PCOR/CER patient stakeholders with IDD; (c) disseminate and refine the socially valid and cognitively accessible research ethics training.
Activities: Using stakeholder engagement, the team will: (a) identify educational content and learning outcomes for patient stakeholders with IDD by cross-walking existing research ethics training content and learning outcomes with common PCOR patient stakeholder roles; identify unique ethical dilemmas for PCOR with adults with IDD; and engage stakeholders to reach consensus on priority learning content, outcomes, and applications; (b) iteratively develop the cognitively accessible research ethics training with patient stakeholders with IDD; the training will include online and real-life, hands-on learning activities corresponding to learning outcomes and ethical dilemmas; (c) optimize accessibility and acceptability by demonstrating the training with PCOR research teams with patient stakeholders with IDD and broader networks of researchers, IRBs, and patient stakeholders with IDD.
Projected Outcomes and Outputs: The team will produce and disseminate a freely available, accessible research ethics training that can be adopted by teams collaborating with patient stakeholders with IDD. Consequently, teams will be able to include research partners with IDD in a broader range of roles, including those that require IRB-approved training, thereby expanding their influence over research, leading to more relevant and valid research on health outcomes for adults with IDD.
