Partnership for People with Disabilities

Overview

Virginia Commonwealth University (VCU)’s Partnership for People with Disabilities and self-advocate leaders (SALs) will improve capacity to engage stakeholders with IDD in patient-centered comparative clinical effectiveness research (CER) by developing a bank of trust-building and recruitment products, guides and resources.

Target Audience:

People with intellectual disabilities, developmental disabilities, non-verbal communication; people of color

Major Activities

Objective 1 is to build a team of 20 SALs with IDD, including those identifying as Black or Latino/a or Hispanic, persons with intellectual disabilities and those who do not communicate verbally. Objectives 2 and 3 are to improve the capacity of healthcare researchers to build the trust of people with IDD and to recruit them in CER by producing and disseminating a customizable resource bank.

Activities: Activities for Objective 1 include collaborating with university and community consultants to recruit 20 SALs and holding 18 two-hour virtual meetings. Objective 2 activities include a trust-building literature review, a SAL conceptualization of “trust,” reviews of previous trust-building strategies, development of a trust-building self-assessment for patient-centered CER projects and a trust-building guide with planning materials. Activities for Objective 3 will culminate in the creation of customizable, IDD-tailored stakeholder recruitment materials, and include a review of recruitment literature and a SAL review and guide of recommended recruitment strategies.

Funding Source

PCORI (Patient-Centered Outcomes Research Institute)

Contact

Seb Prohn smprohn@vcu.edu