Equity & Inclusion in Accessible Survey Design Event

by | Dec 2, 2021 | Events, Higher Education, Social Science Business, Survey Methodology

Join us for this important event at the University of Michigan, Institute for Social Research Inclusive Research Matters series, when Soundrocket founder Scott Crawford presents on equity and inclusion in accessible survey design.

Event Title: Equity & Inclusion in Accessible Survey Design
Date and Time: Wednesday, December 8, noon to 1:10pm ET via Zoom
Speaker: Scott Crawford (Founder and Chief Vision Officer, SoundRocket)

Event Summary: As we work to adapt research designs to make use of new technologies (web and smart devices), it is also important to consider how study design and survey design may impact those who rely on assistive technology. Sections 508 (covering use of accessible information and communication technology) and 501(addressing reasonable accommodation) of the Rehabilitation Act of 1973 compliance standards have been around for a long time—but the survey research industry has often taken the path providing reasonable (non-technological) accommodations for study participants. These often involve alternate modes of data collection, but rarely provide a truly equitable solution for study participation. If a web-based survey is not compliant with assistive technologies, the participant may be offered the option of completing a survey with an interviewer. Survey methodologists know well that introducing a live human interaction may change how participants respond—especially if the study involves sensitive topics. Imagine a workplace survey on Diversity, Equity, and Inclusion where a sight-impaired employee is asked to answer questions about how they are treated in their workplace, but they are required to answer these questions through an interviewer, and not privately via a website. Not only is this request not equitable for the employee (fully sighted employees get to respond more privately), it can also bias the results if the participant is not honest about the struggle for fear of receiving backlash from their employer if the interviewer passed along their frustrations. In the act of being denied equitable participation, future decisions will then be made on potentially faulty results about the experience of such people.

Equity & Inclusion in Accessible Survey Design

In this presentation, I will focus on developing an equitable research design, partially through considering the overall study—not just the technology itself. But we will also share experiences in the development of a highly accessible web-based survey that is compliant with screen reading technology (screen readers, mouse input grids, voice, keyboard navigation, etc.). I will present experimental, anecdotal, and descriptive experiences with accessible web-based surveys and research designs in higher education student, faculty, and staff surveys conducted on the topic of Diversity, Equity, and Inclusion. Our results will be directly relevant for inclusion and equity in these settings as well as some surprising unintended positive consequences of some of these design decisions. Lastly, I will also share some next steps for where the field may go in continuing to improve in these areas.

Currently, the FDA only regulates true direct-to-consumer (DTC) genetic tests, which have no health care provider involved either before or after testing. Consumer-initiated, physician-mediated genetic tests are considered lab developed tests (LDTs), which currently do not require FDA oversight. 

 

Our Study Design

Our study was designed to simulate the experience of an everyday person who is considering doing a health-related genetic test. For this reason, we only reviewed website contents presented to a consumer before ordering a test. By limiting our data collection to pre-test content, instead of digging around or contacting the companies to fill in missing data points, gaps in public-facing information that consumers use to make ‘informed’ decisions were revealed.  

Also, while a genetic counselor supervised the project, a research assistant (RA) conducted most of the website investigations. The RA was familiar enough with genetics and genetic testing to understand and identify the information presented on the websites, but has not had the clinical exposure that might create bias from knowing how specific tests work “behind-the-scenes”. 

 

To Sum Up

We set out to understand the landscape of health-related consumer genomics testing from the public perspective. By limiting our research (by design) to public-facing pre-test website content, we could not complete our data collection as set out in the protocol. However, this uncovered an important observation: consumer genomics websites are highly variable in content, readability and ease of use. 

This begs the question, if we can’t find basic test information on a consumer genomics website, how does a consumer have enough information to make an informed choice about testing? 

Stay tuned for Part 2 in this series, where we will dig into our study findings and reveal our most interesting observations.  

 

 

As experts in FDA user comprehension studies for consumer genomics companies seeking 510(k) clearance, we are interested in how everyday people access and understand health content that is meant for them. If you need help optimizing your consumer-directed health communications, we’ve got the in-house expertise and experience to meet your needs. Let’s chat

About the Author

SoundRocket

Understanding human behavior—individually and in groups—drives our curiosity, our purpose, and our science. We are experts in social science research. We see the study of humans as an ongoing negotiation between multiple stakeholders: scientists, research funders, academia, corporations, and study participants.