Reconciling the Past & Changing the Future

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:


 

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?

What does a research volunteer do?

People who meet the inclusion criteria:

  • Studies look for people based on age, disability, race, ethnicity, language spoken, where you live, and other characteristics
  • Answer questions about a topic (surveys, interviews, focus groups)

  • Try a new medicine, therapy, or participate in training


Be part of the team that designs and carries out a research study

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.