- Create a patient-centered outcomes focused research community of African-American families of children with ASD, African-American self-advocates, and ASD researchers and practitioners from the Autism Care Network (ACNet) that is dedicated to the needs of the African-American community and to improving the capacity to conduct PCOR/CER across the country
- Create culturally responsive training materials for African-American self-advocates with ASD, families of children with ASD, and ASD researchers and practitioners about conducting ASD PCOR/CER and partnering with African-American self-advocates and families
- Use the training materials to conduct skill-building leadership trainings for African-American stakeholders
- Provide training to build the capacity of researchers to partner with the African-American ASD community
- Develop research questions and a research agenda based on PCOR/CER principles and the needs of the African-American ASD community and disseminate the lessons learned.
Patient and Stakeholder Engagement Plan & Project Collaborators: Family Voices will engage its network of 59 Family-to-Family Health Information Centers to recruit African-American stakeholders. Additional partners include Yetta Myrick, a CDC Act Early Ambassador, and Brian Boyd, Director of the Juniper Gardens Children’s Project. Karen Kuhlthau, Associate Professor at Harvard Medical School, will co-lead trainings for researchers.
By intentionally engaging the African-American ASD community, Family Voices will increase their ability to participate across all phases of patient-centered outcomes research, and the team will share this model and its learnings broadly across its national network.