Patients and Families as Co-Scientists: Capitalizing on Connection and Co-Constructing Answers

By Mary Tantillo, PhD PMHCNS-BC FAED

I am honored to be writing in the advent of the first World Eating Disorders Action Day. This day is dedicated to fostering partnerships around the world to change the ways eating disorders are understood and treated. Our hope of fashioning the richest and most accurate understanding of eating disorders and their effective treatment lies in our ability to integrate clinical and research knowledge with the lived experience of patients and families.

As we approach World Eating Disorders Action day, I want to highlight the important role that patients and families can play as “co-scientists” in scientific endeavors. Over time researchers have let go of old assumptions that truth is objective and absolute, “out there somewhere” for detached researchers to find and verify. Instead, scientists have increasingly recognized that knowledge is “co-constructed” by study participants AND researchers. This awareness reinforces the important role of patients and families as experts in the generation of research questions, the conduct of research, and the generation of scientific knowledge.

Patients, family members, and researchers influence and are influenced by the changing understandings of eating disorders, and they influence each other during the research process. They all come to the research endeavor influenced by their own motivations, meanings, theoretical and philosophical orientations, gender, sexual orientation, and other cultural conditions. The trick is to embrace these differences and to work together to leverage them in the systematic examination of eating disorders, healing, change and recovery.

Involving patients and families as co-scientists as well as participants in research increases the chances that important questions related to eating disorders and their treatment are being identified and addressed. Their involvement also increases the chances that moderators of treatment will be identified, i.e., variables that help treatment work better in some contexts versus others. Examples include contextual variables such as one’s living situation, the level of perceived mutuality in relationships, and how the therapist frames problem areas. Best practices will then be based upon what is truly effective in real-life situations – the best synthesis of science, contextual/personal knowledge, clinical observation, experience, and judgment.

Patients and family members as co-scientists can play an essential role in research studies regardless of whether a study is a randomized, controlled trial or a qualitative study examining lived experience and its associated meanings. As part of the research team they can identify research questions, assist with development of measures, provide feedback about methods, and participate in development and testing of empirically-supported treatments. Ideally, a patient and/or family representative should be part of institutional review boards.

One approach to including patients and families as participants AND co-scientists in research is exemplified in our current Multifamily Therapy Group (MFTG) research pilot study for young adults (ages 18-40) with Anorexia Nervosa and related eating disorders marked by food restriction and weight loss. This study, Reconnecting for Recovery, is funded by the Hilda and Preston Davis Foundation and is currently recruiting young adults and 1-4 of their respective family of origin or choice members to serve specifically as “co-scientists” and participants in the study. I have partnered with patients and families over the past decade to develop this particular family group approach. Our work has included clinical observations during previous MFTG cycles, obtaining feedback during each group cycle about strengths and limitations of the group format, and soliciting feedback about the target of group interventions. I also held an alumni focus group for previous MFTG patients and families and conducted a content analysis of the group transcripts to create the most current version of the MFTG manual specifically targeting young adults with AN.

Our current pilot includes two groups of five young adults and their family members who will evaluate each session of the 16-week family group and will also complete outcome measures assessing upstream processes and downstream outcomes related to Anorexia Nervosa. Learn more about the group at http://www.junealexander.com/2016/04/call-for-co-scientists-in-multi-family-therapy-group-research-for-adults/ This research pilot approach allows patients and families to receive the free intervention and provide qualitative and quantitative feedback about the group. It also allows me to code group transcripts to detect what transpires within and among participants as they interact during the group. The approach provides a huge return on investment, capitalizing on patient and family expert knowledge about themselves, the illness, their response to treatment, and the recovery process.

My work with patients and families over the years led me to develop a model for understanding eating disorders as Diseases of Disconnection. This understanding led us to craft a Multifamily Therapy Group intervention that aims to restore internal and interpersonal connections. I do not think that I would have arrived at this model without the benefit of participants’ lived experience and honest feedback. Only in connection with patients and families can we hope to generate more accurate and fuller understandings of eating disorders and develop effective treatments that patients and families need and deserve. Happy International Eating Disorders Day.

About Dr. Mary Tantillo
Dr. Tantillo is the Director of the Western NY Comprehensive Care Center for Eating Disorders, Professor of Clinical Nursing at University of Rochester School of Nursing, Founder and CEO of The Healing Connection Inc.  and a fellow in the Academy for Eating Disorders.

Join Dr. Tantillo in supporting World Eating Disorders Action Day. Be sure to follow along on Twitter @WorldEDDay and hashtag #WeDoAct, #WorldEDActionDay, @WorldEatingDisordersAction on Instagram and World Eating Disorders Action Day on Facebook.