About Us
IDD-TRANSFORM: Building a Patient-Researcher Collaborative for Health Research About Intellectual and Developmental Disabilities
Adults with intellectual and developmental disabilities (IDD) experience significant health disparities. They have poorer health outcomes than other adults and have an average life expectancy that is ten years lower than adults without IDD. Unfortunately, there are few examples of partnerships between researchers and adults with IDD aimed towards improving access to healthcare.
That's where our project, IDD-TRANSFORM, comes in. IDD-TRANSFORM is a collaborative, sustainable partnership that is centered on the perspectives of adults with IDD. Our team is made up of adult patients with IDD, caretakers of adults with IDD, community organizations serving adults with IDD, and clinicians/researchers serving adults with IDD.
Broad Mission:
The mission of our project is to improve health, health care, and health outcomes for adults with intellectual and developmental disabilities in a measurable way, by engaging and centering the voices of adults with IDD themselves.
Our Engagement Methods
Focus Group Discussions and Interviews
As part of our engagement efforts, we are holding virtual focus group discussions and interviews with adults with IDD and family members/caregivers of adults with IDD who have communication limitations that make it harder to participate in an interview themselves.
Alternative Engagement Methodologies: Our Voice
In addition to focus groups and interviews, we are using other methods to engage adults with IDD who find it harder to participate in focus group discussions themselves. We have partnered with the Our Voice research team at Stanford to use their Discovery Tool in our research projects. The goal is to include perspectives of adults with IDD who have not traditionally been included in this kind of engagement work, or solicited on these important topics.
Virtual Health Partnership Forum
To reach the broader community of IDD stakeholders, we host a monthly seminar on a range of topics related to health and healthcare for adults with IDD. These seminars are free and open to the public.