How people with IDD-MH and families can get involved in research

What is research?

Advisory board member, Max Barrows, defines research.

There are two ways to get involved in research:

Download descriptions of different research roles, from research participant to principle investigator.

Use the cards below to learn how to volunteer to be in a research study and how to join a research team.

Volunteer to be in a research study

Jessica Kramer, a member of our leadership team, provides information about research volunteers. 

These are words people use to describe research volunteers: Research participant, “human subject”, key informant, respondent

Who can volunteer for a study?

• People who meet the inclusion criteria. Studies look for people based on age, disability, race, ethnicity, language spoken, where you live, and other characteristics

What does a research volunteer do?

• Answer questions about a topic (surveys, interviews, focus groups)
• Try a new medicine, therapy, or participate in training

Join a research study team

A member of our leadership team, Destiny Watkins, talks about her experience as a member of a research team.

Micah Peace, a member of our leadership team, explains that researchers look just like you.

Who can be a member of a research team?

• People who are experts on a specific topic.
• What makes you an expert?
  • Lived experience of IDD-MH
  • Experiences with services and supports
  • Prior research experience
  • Other skills (for example, training as an advocate)

What would you do as a member of a research team?

• Think of research questions that are important to your everyday life.
• Make sure the steps of the research study (methods) are fair and ethical.
• Make sure the research is accessible.
• Share things about yourself and your life with the research team.
• Explain the research study to other people.
• Ask people questions (for example, give a survey or hold an interview).
• Help to understand the data.
• Share what you learn from the research with other people.