Poor or slow recruitment into research studies has a negative impact on research discoveries and shorten patient lives. There are lost opportunities for new discoveries, and evidence-based resources and services are delayed. Funding organizations and researchers need to come up with creative solutions to address this problem. There is a lack of knowledge directly obtained from patients on their personal experiences with research and barriers to participation. This is especially true with autism spectrum disorder, where rates for participating in research are among the lowest.
The Autism EXPECT study (Experience of People Enrolled in Clinical Trials) is a tool that assesses the degree to which logistical (i.e. time, distance, transportation, cost, childcare, language barrier) and personal (i.e. social media influences, altruistic, financially incentivized, fear/phobic, stigmatic, ignorance, physician influence) participation factors in order to effectively shape content, design and messaging for increased participation. This survey differs from what you may have participated in before, it isn’t about customer satisfaction, it is about identifying factors that would influence future research of other studies, as well as identifying individuals who would not normally participate in research and why. The EXPECT study wants your input, even if you have never participated in research before. You will be asked about 30 questions and it takes about 20 minutes. As a thanks for participating, you will be entered in to win an iPad.
The Autism Science Foundation and University of Pennsylvania are conducting this survey to hear from you and what factors are most and least important to you as you consider participating in research. This will ultimately help shape future studies to be more accommodating and to include the things that you say are most important to you. Thank you in advance for your help with this project. Please visit bit.ly/Expectsurvey to fill it out.
Why is the survey structured so as to exclude those parents and/or professionals who are also themselves autistics? Many of us autistics are professionals and/or parents ourselves — but the survey requires being either one OR the other. This introduces several unacceptable artifacts in the research.