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Susan Cowden, MS

NEDA Survey Sparks Controversy

By November 20, 2012

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If you currently receive emails and information from the National Eating Disorders Association (NEDA) then it is likely that you received an e-mail asking for your participation in a survey about your experiences with eating disorder treatment.  The survey was administered by NEDA and an insurance company, Optum.  Optum is part of United Behavioral Health.

A California-based law firm, Kantor & Kantor, released this statement of concern regarding the survey in their recent newsletter:

"We feel it is important for you to understand that this survey was created by Optum, which is more than just a "leading information technology-enabled health services business." Optum is the parent company of United Behavioral Health, an insurance company. As such, we highly encourage you to read both the Privacy Statement and the Terms and Conditions carefully, which reveal that the results of the survey will be the sole property of Optum.

Furthermore, we strongly encourage anyone who is thinking of completing this survey created by Optum to consult with your health care professional prior to doing so, as some of the questions may be triggering for you, your loved ones, and/or your clients.

We believe that surveys seeking to collect information from those who presently have an eating disorder, are in recovery from an eating disorder, have a loved one with an eating disorder, or are professionals in the field of eating disorders, should be created and supervised by qualified researchers in the field of eating disorders, and approved by an IRB. We feel it is unethical and inappropriate for an insurance company to ask personal questions of people suffering eating disorders, as well as it is inappropriate for an insurance company to ask NEDA to distribute a survey that was not vetted by researchers, or approved by an IRB. Lastly, we are concerned about how Optum, United Behavioral Health or any of its related companies, may use the survey information in court against our clients."

Kantor & Kantor is a law firm specializing in representing people who have been denied insurance claims.

However, a letter available on the NEDA website assures everyone who has taken the survey that:

"To ensure that families come first, our agreement with Optum requires mutual consent regarding use of the information. The decision to release the results will be made with the interests of those battling eating disorders in mind and we will not agree to the use of the information for any purpose that we believe would be harmful to those with eating disorders."

What do you think?  Are you concerned that the survey's information will be used against people who suffer from eating disorders?  Or, do you think it will help people get the treatment that they need?

November 22, 2012 at 4:05 pm
(1) Jessica Setnick says:

I also sent comment to NEDA when I received the survey, because I felt the terminology used would lead to confusion, for example “clinician” vs. “therapist” and “nutritionist” vs. “dietitian.” As anyone who has been through the insurance run-around knows, semantics can take on abnormal importance. I did not receive a response to my email, but reading later that a multi-disciplinary team was not involved in the creation of the survey was informative. I agree with Lisa Kantor that the survey process would benefit from such a multi-disciplinary team of professionals on the development end. Jessica Setnick, MS, RD, CEDRD

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