"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.
This study is currently closed to new participants. We will be posting results and a link to the finished AASPIRE Healthcare Toolkit when they are available.
We will finish analyzing the data we collected from study 3 participants.
We will update the toolkit with the suggestions and things we learned from our study participants.
We will post a link to the finished toolkit for use by the public.
We will publish a few papers about the study. As each paper is published, we'll post a link to the scientific paper and a plain language summary.
Updates will be posted on this site, or join our announcement list.
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