The Research, the Research, the Research!

by | Aug 24, 2015 | Business Leadership, Fun, Opinion / Editorial

If my office location being in Ann Arbor, Michigan doesn’t tip you off to my collegiate sports allegiance, then this will.  In 1983, University of Michigan football coach Bo Schembechler addressed his team with a motivational talk now known as The Team, The Team, The Team.  I am reminded of this talk on this hot and muggy August day – just a few miles down the road from where, probably as I type this, the current Michigan football team is preparing for the season. So why is this relevant here? It’s the research, people!


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I read his talk and I think about all of our amazing individual employees.  I think about our nationally known research customers.  I consider the pile of papers written by colleagues that sit on my desk ready to be read.  I also consider the investment made by our research participants – the trust, time, and effort, often without much in return, that they put in.

What we are doing isn’t about any one of the individuals involved.  It is about all of these individuals – and we cannot forget that.  It is about what brings us together to do science, as scientists, practitioners, and participants.  In this world, our “team” is the “research”.   I quote directly from Bo’s talk, with modifications noted in brackets:

No man is more important than the [research]. No [individual] is more important than the [research]. The [research], the [research], the [research], and if we think that way, all of us, everything that you do, you take into consideration what effect does it have on my [research]?

As a field we have done fairly well at involving the researchers and the implementers in our research.  How have we done with our participants?  

Have we done what is needed to make them part of this team?

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

Scott D. Crawford

Scott D. Crawford is the Founder and Chief Vision Officer at SoundRocket. He is also often found practicing being a husband, father, entrepreneur, forever-learner, survey methodologist, science writer & advocate, and podcast lover. While he doesn’t believe in reincarnation, he’s certain he was a Great Dane (of the canine type) in a previous life.