SoundRocket Founder to Speak at FEDCASIC Workshop

by | Apr 15, 2019 | News

Washington, DC – April 16-17, 2019

If you would like to spot some serious survey nerds while enjoying the Cherry Blossoms in Washington, D.C. this year, step on down to the Bureau of Labor Statistics where SoundRocket founder Scott D. Crawford will be presenting at the The Federal Computer Assisted Survey Information Collection (FEDCASIC) Workshop. Scott will be presenting “Best Practices in Consent to Capture Geolocation Data in Self-Administered Web Surveys” in the Wednesday afternoon session on Advances in the Use of Location Data.  

SoundRocket has several years of experience in capturing geolocation data with its collaborators in surveys – and in doing so, has learned that the process used to obtain consent to capture this data has a significant impact on the quality of the data that is ultimately captured.

Come learn the secrets – and maybe get a little survey nerd networking in! 

Download Scott’s presentation here

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.