Communities of HEALing, a groundbreaking and unprecedented approach to eating disorder recovery
Project HEAL is the leading non-profit in the US delivering prevention, treatment financing, and recovery support for people suffering from eating disorders.
The statistics are staggering: 30 million Americans (10%) suffer from eating disorders. This disease has the highest mortality rates of all mental illnesses yet, due to cost, lack of insurance coverage, and the stigma of eating disorders, most sufferers do not get treatment.
The current treatment model consists of intensive and acute stays at residential centers or hospitals. Following discharge, there are few opportunities at lower levels of care that are cost-effective and can continue until that client reaches recovery, which often takes several years.. For this reason, relapse rates in the first year following treatment are as high as 50%.
To address this issue, Project HEAL developed Communities of HEALing, the first peer mentorship program for people with eating disorders. Fully recovered peers serve as mentors, and provide support, accountability, and serve as a model that full recovery from an eating disorder is possible. We are currently studying the program as a randomized controlled trial in partnership with Columbia University Eating Disorders Research program.
Communities of HEALing is innovative in its approach as the first peer-support program for people with eating disorders. Peer support for other mental illnesses is widespread, effective, and feasible, including in areas of substance use (i.e. Alcoholics Anonymous) and severe mental illness, but has not been utilized in the eating disorder field.
The program was developed in collaboration with the leading eating disorder experts in the field, including former National Institute of Mental Health director ,Tom Insel, and with input from former and current patients. Mentors complete a comprehensive seven-week, five hours per week online training that grounds them in best practices of eating disorder recovery and peer support. We are also utilizing Recovery Record, the leading technology app in the field, to pair mentors and mentees. We know this tool leads to better outcomes in therapy, so we are employing it for peer support.
In August 2016, Project HEAL convened a strategic meeting of top researchers in the eating disorder field to discuss how to drive significant change in a fairly stagnant field. This meeting solidified our decision to focus on strengthening lower levels of care and relapse prevention.
Communities of HEALing was then designed by the eating disorder community. After our leadership meeting, we spent 3 months conducting stakeholder interviews with our chapter leaders about the most important aspects of their recovery. We are the first eating disorder organization to utilize recovered volunteers to help others in recover, and emphasize utilizing non-experts in treatment.
As funding becomes available, we are disseminating information to all of our 40 Chapters, and launching the program in the largest and most sustainable of our Chapters.
Project HEAL already has 40 volunteer chapters across the United States which will disseminate the program. Additionally, we have partnerships with over 30 eating disorder treatment centers which serve as referral sources. Finally, we have strong partnerships with mental health organizations including the National Alliance on Mental Illness, JED, Thrive NYC, and the Los Angeles County Department of Mental Health.
Through our randomized controlled trial with Columbia University Eating Disorder Research program, we hope to demonstrate effectiveness and cost effectiveness of the program. Early study results are promising, and we expect that later positive results will enable a sustainable funding model through health insurance reimbursement. Initial talks with insurers have been positive and we are embarking on a pilot with a large health insurance provider in New York City.
Because we operate primarily with volunteers, this is a low-cost program to implement, making it highly desirable to organizations with small or tight budgets.
Our training program is centrally operated and run online. Mentors and mentees can be located anywhere, as they can meet via Skype and Facetime.
We plan to replicate this program in our 40 Chapters across the United States.
In the future, we plan to bring Communities of HEALing everywhere that there are at least 4 recovered people who want to make a difference in someone else’s life. We also plan to build affinity groups for traditionally underserved populations, including LGBT groups, people in larger bodies, minority groups, and men.
Our proof of concept involved piloting Communities of HEALing with 10 pairs that included a recovered person (mentor) and a patient recently out of treatment (mentee). Our preliminary outcomes were promising. In addition to mentee’s generally positive qualitative feedback regarding their individual experiences, preliminary data showed a reduction in anxiety, general psychiatric symptoms, and impairment in quality of life due to their eating disorder.
We expect that Communities of HEALing will have a positive impact on beneficiaries in domains of ED symptoms and risk for relapse (measured by the EPSI and BMI metrics), ED related quality of life (measured by the EDQOL), co morbid psychiatric symptoms (measured by the STAI and PHQ9), and long-term health care cost/utilization (measured by our health care utilization survey). We are measuring these outcomes in the context of a randomized controlled trial with Columbia University.
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