Engagement to Identify Health Priorities of People With Intellectual and/or Developmental Disability

Why is this an important issue?

People with intellectual and/or developmental disabilities (IDDs) don’t always get good health care.

What was the purpose of the project? 

This project had a big goal: to find out what health outcomes are most important to people with IDD. We first needed to create ways for many different partners to work together and share ideas.

What did the project team do?

We worked with different people, including adults with IDD, caregivers, clinicians, and those in charge of health insurance plans. Together, our team developed ways of working together. We used videos, drawings, and easy-to-understand language. We made sure everyone, including those with different communication needs, could take part. In total, 58 people shared their ideas about important health goals in meetings and online sessions.

What were the results of this project?

We learned that using drawings and other ways of showing ideas visually without words was helpful for many different groups of people. For people with IDD, having 1-on-1 meetings to prepare for larger group meetings was helpful. Videos sent before meetings to describe the agenda and discussion questions were helpful for both people with IDD and caregivers. We learned that people with IDD and other partners want research to address nine health priorities that affect positive outcomes of people with IDD.

What do these findings add to what we know?

We learned that using artist-created drawings and using other visual tools like Miro® were helpful for all people to work together.

What are the potential weaknesses?

We need to talk with more people about these health outcome priorities to be sure they are complete.

How will these findings help people now or in the future?

These ideas for helping many different partners work together are useful for other teams. The project outcome with illustrated priorities can help make these ideas more accessible to a wider audience.