"This Is about My Health": Partnering with Patients and Families to Share Knowledge and Tools about Healthcare Communication for Adults with Intellectual and Developmental Disabilities.

ABSTRACT

This project involved patients with intellectual and developmental disabilities and a family caregiver as advisors on a knowledge translation (KT) effort on healthcare communication. The project demonstrated that with the right supports, patient and family advisors can effectively share their experiences and add a powerful voice to KT activities. Lessons learned included the importance of being creative, responsive and flexible to support the advisors, of recognizing their expertise and of building capacity in multiple advisors to allow for diverse voices and greater flexibility. This work requires adequate time and funding, which needs to be factored into planning.