"Partnering with Autistic Adults* to Develop Tools to Improve Primary Healthcare"
The AASPIRE Healthcare Toolkit project uses a community-based participatory research approach to develop and try out an interactive web site and printable toolkit for adults on the autism spectrum, people who support adults on the autism spectrum, and primary care providers. The purpose of the toolkit is to help improve healthcare access and quality for people on the autism spectrum.
We will conduct three studies to develop and try out the toolkit.
Study 1 seeks to understand healthcare experiences and recommendations of autistic adults, people who support autistic adults, and primary care providers (PCPs). We will be asking people to tell us about their experiences and recommendations.
Study 2 will test a program for creating a customized accommodations letter. Adults on the autism spectrum can use this letter tool to communicate their needs and preferences to healthcare providers. We will conduct several studies to make sure that the tool is easy to use and that it communicates useful information to healthcare providers.
Study 3 tries out the full toolkit in the "real world" to see how people like it. We will ask adults on the autism spectrum and primary care providers to use the healthcare toolkit and tell us what they think.
We have completed Study 1 and Study 2. We are currently conducting Study 3. We are looking for people who live in the United states, have a primary care provider (or regular doctor) and are:
To find out more information about the study or to see if you are eligible to take part, please do one of the following things:
The screening survey will include up to 10 questions. You will not be paid to take the screening survey.
If you are eligible to take part in Study 3, you will take a 20-minute survey before and after using the toolkit. With your permission, we'll also ask your healthcare provider for feedback on the toolkit. Participants will receive $30 for being a part of the study.
Please help us spread the word about the study! Here are fliers about Study 3 that you can pass along to others. Also, please feel free to link to this site.
This project is funded by a grant from the National Institute of Mental Health (R34MH092503).
OHSU IRB #5580
Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University; Dora Raymaker, MS, Autistic Self Advocacy Network
* Explanation of use of Person First Language on this site