Angela, a 20 year-old patient with anorexia nervosa, has been in weekly outpatient treatment for the past 2 months. Since beginning treatment, her symptoms have stabilized but not improved. Angela’s therapist is aware that a local research clinic is conducting an outpatient medication trial for anorexia, and he believes she may be a good candidate for the study. Her family agrees and encourages her to call the study intake line. However, she is hesitant to reach out to the research clinic because she assumes the study would require her to stop psychotherapy and would involve unpleasant tests and procedures that would leave her feeling like a lab rat. Despite his best efforts, Angela’s therapist is unable to provide enough details about the research to reassure her. However, he knows she needs additional help, so he instead refers her to a psychiatrist colleague whose services are not covered by her insurance plan.
The world of clinical research can often feel shrouded in mystery. What does it mean to be part of a study? What will I be asked to do? How do I know if I am eligible to participate? What does it mean about me if I’m not eligible?
Misunderstandings, myths, and fears may keep someone who is otherwise interested from making the initial phone call to learn more about research opportunities at clinics like ours. Angela’s story illustrates some of the gaps in knowledge and communication that may exist between the worlds of clinical treatment and clinical research. Her story, like many others’ stories, emphasizes the need for continued dialogue among researchers, clinicians, and potential participants to bridge these gaps.
Research in the field of feeding and eating disorders can involve any of a number of procedures: structured interviews (having a detailed conversation about your symptoms with a trained interviewer), questionnaires (answering questions about symptoms or behaviors relevant to a particular study’s hypothesis), computer tasks, observations in specific settings, treatment trials, and imaging methods all constitute research. These activities are designed to answer questions about the behaviors, biology, and neurobiology involved in the development and maintenance of a condition, with the ultimate goal of improving knowledge and treatment strategies. Research participation provides a valuable contribution to the field and can be a way of “giving back” by helping others who may struggle in the future.
At the recent International Conference on Eating Disorders, I had the pleasure of participating in a workshop designed to generate ideas about how clinicians, researchers, patients, and families can better collaborate and cooperate in the pursuit of greater knowledge about eating disorders. Here are some of the many ideas generated by that discussion:
Research participation can open the door to clinical treatment. For some people with eating disorders, participating in a study is far less intimidating than presenting to a psychiatrist or psychologist for treatment. The first step in most research studies is a thorough assessment of symptoms and functioning, a procedure that may be enlightening and helpful in its own right to an individual in the throes of illness. Also, participating in research can help a person with an eating disorder feel less alone in his or her struggle, which may help reduce shame, embarrassment, or hopelessness about recovery. Finally, even if research programs don’t offer treatment in-house, as our program does, research participants are typically offered referral information about programs and clinicians in the area who specialize in the treatment of eating disorders.
Clinicians are often the best bridge-builders. Psychologists, social workers, nutritionists, psychiatrists, and primary medical doctors are often in the best position to identify patients who may be good candidates for clinical research and who may benefit from specialized care. Clinicians in the community can help stabilize and motivate patients, provide diagnostic information, and make people aware of ways they can make a scientific contribution by participating in research at local clinics or universities. Partnerships between clinicians, research teams, and advocacy organizations can facilitate the giving and receiving of referrals and can help patients to know that their clinical care and research involvement are closely connected.
Don’t be afraid to ask. Whether you’re a patient, clinician, family member, or patient advocate, information about clinical research is available for you. The best way to learn more is to call research clinics directly to receive answers to your specific questions and to start building a relationship with the research team. You can also find general information about research programs through websites for advocacy groups such as the National Eating Disorders Association, through social media, and on blogs like ours.
Had Angela known that participating in the medication trial would involve answering some questions about her symptoms, taking a study medication, and coming for regular check-ins with a doctor, she may have made a different choice about participating in research. A brief phone call to the research clinic might have reassured her that she was neither “too sick” nor “not sick enough” to be eligible for the study, and that she could continue to work with her outside therapist while participating. If she had instead learned that she couldn’t safely participate in the research for some reason (perhaps if she had a different medical or psychiatric problem that made her ineligible), she would have been notified about other known research opportunities and received additional referrals for specialists in the community to help her round out her treatment team. Finally, Angela needed to know that she would be cared for and supported by a team of clinicians and researchers throughout the study who would work steadily in collaboration with her to keep her from feeling like a lab rat.
Whether you’re a clinician, researcher, patient, family member, or friend, you can play a role in advancing knowledge about eating disorders that will help us fight the battle against these destructive illnesses. By working collectively and collaboratively, we can together build the bridges that will help patients make informed decisions about research participation.
For more information on current eating disorders research at our program, please read about our latest studies, call us at 646-774-8066, or email us at edru@nyspi.columbia.edu.
