Improving Access to Medical Services for Those with Intellectual and Developmental Disabilities: Creating an Inclusive Provider Audit Tool

We want to invite you to join our study, titled "Improving Access to Medical Services for Those with Intellectual and Developmental Disabilities: Creating an Inclusive Provider Audit Tool." It's your choice to be part of it. Please read this carefully before you decide if you want to join.

You can also watch this video for help understanding more about the study.

What the study is about

The Public Health Institute (PHI) is a group that studies health and how people get care. We are doing this study to learn more about how people with intellectual and developmental disabilities (PWIDD) feel about their health care and the doctors or nurses who help them. This information will help us create a tool for doctors and nurses. They will use this tool to check how welcoming and helpful their services and offices are for people with disabilities. This study is paid for by the Special Olympics.

Who is leading this study?

Jerri Davison, JD, Director of PHI’s Center on Disability
Brenda A. Leath, DPS, MHSA, PMP, Executive Director of the Center to Advance Community Health & Equity

Both Jerri and Brenda work at PHI. Eileen Elias will also be helping them. Eileen has done a lot of work for and about people with disabilities.

What will happen

If you agree to participate in this study, you will take a survey. The survey is 26 questions about your healthcare experiences. Your answers are anonymous, meaning that it will not be connected to your name.

The team will keep the study’s data for future research purposes and may release de-identified (not connected to a specific person) data to collaborators and other researchers who must agree to the PHI data security protections. The project team will destroy all project documentation three years after the study has been completed, which is anticipated to be no later than December 31, 2028.

Risks of survey participation

There are some risks when you share information about yourself. Answering some of the questions may make you feel uncomfortable. You do not have to answer a question if you do not want to. You can skip to the next question. You can leave the study and stop participating in the study at any time.

The survey will not ask your name or any contact information to keep any risks low.

Benefits of participating

Being part of this study might not help you personally. But we hope the information we learn will help us understand the experiences of people with intellectual and developmental disabilities (PWIDD) in health care. The goal of the study is to show medical staff how they to make their services better for people with disabilities.

Questions

If you have any questions about the study or your rights, you can call Dr. Brenda Leath at 202-345-0304 or email her at Brenda.Leath@thecachecenter.org.


You can also call Robert McLaughlin, J.D., Ph.D., Administrator of the PHI Institutional Review Board (the committee that oversees PHI research involving human subjects) during regular business hours at (5510) 285-5500.

Accommodations

If you need help with completing the survey, please email admin@adapacific.org. Someone on our staff will contact you to learn more about what type of assistance you need.

Consent

Your participation in the study is voluntary.

By clicking Yes below, you agree to participate.

Thank you for your participation!