“Being a research subject may sound scary, or evoke images of being treated like a human guinea   pig, but it’s nothing like that at all.”  (Marty) 

Those words were spoken by a former patient who participated in a clinical research study, and reflect what some may feel when they first hear the word “research” in a clinical setting.  As a member of a team that conducts research on eating disorders, I want to share with readers some reflections by individuals with eating disorders who decided to participate in a treatment program that includes research and hopefully debunk some common myths about what research participation is all about. 

Here are a few of the most common myths I hear:

Myth: I can’t afford treatment and research studies are impossible to get into.

Fact: One of the unique features of research programs is their ability to provide care at no cost to individuals interested in and eligible for research participation.  Treatment goals and length of stay are not limited by insurance review or other financial elements, and participants have more time to experience normalization of eating behaviors and weight.

Myth: If I participate in research, I’ll be poked, prodded and put on display.

Fact: Specific research studies vary over time; studies are typically funded by federal or private grants to conduct specific procedures aimed at answering particular questions over a specified time period. Studies may involve questionnaires, interviews, computer tasks; observations of eating certain meals; or brain imaging (using MRI). Participation in all research is voluntary and is offered in addition to treatment. Studies, along with treatment, may take place on an inpatient unit, or in an outpatient setting, depending on the particular study.

Myth: I don’t think my story can help anyone.

Fact: Although some may feel self conscious about sharing their stories at first, many participants take pride in being able to “give back” to others by helping further the knowledge about eating disorders by participating in these studies. It often takes years and many participants to accumulate enough information to complete a given study. Some studies are multi-site, meaning several centers are working on the same studies simultaneously.Individual results from research are confidential; when a study ends, researchers analyze all of the data obtained and report on patterns (findings). This contributes to helping the field move forward.

Here are some experiences from others who have had positive experiences with receiving care for an eating disorder from clinical research studies: 

• “I am very thankful to have been given the opportunity by the doctors and staff …. to regain a relatively normal relationship with food and the ability to understand the things that I need to do to maintain recovery. The treatment I received at no cost was tremendous motivation to participate in as much research as possible. “(Sara)
• “This is not an easy program, but it is not an easy disease. I struggled with an eating disorder for 15 years. I tried many different programs….but was never able to completely eradicate eating disordered behaviors. I was exhausted, frustrated and had given up on having a normal life. The ….Program recognizes the disease for what it is, and combines research-based guidelines with an experienced staff to give its patients the best possible chance at a real life. Research is an integral part of the program…the array of weekly groups offered multiple benefits. The most important part of the program is the time factor. The staff views the weight gain as the beginning of the journey, whereupon a patient can practice new skills and still return safely to the hospital.” (Marcie)
• “I studied psychology in college and thought it was interesting to participate in research …. I was interested in seeing the picture of my brain taken during one of the studies. It somehow makes it easier to get better knowing that I’m helping others while I’m trying to help myself.” (Rebecca)

Getting well can feel scary. Change can feel scary. Research can sound scary. But all of these are part of growth – personally and in the field of eating disorders. Research can be an avenue to treatment and a satisfying experience.

For more information on research and treatment, or participation as a study control, please call 646-774-8066, or email [email protected], or search for other research studies in your area on the NEDA website here. 

Barbara Smolek, OTR, MPA is Program Administrator at the Columbia and Weill Cornell Center for Eating Disorders.