Communities of HEALing

Communities of HEALing is a novel peer-mentorship and social support program for reducing relapse in outpatients with eating disorders

30 million Americans suffer from eating disorders (EDs), and lack of access to affordable treatment is a primary barrier to recovery. Most sufferers are unable to access treatment due to high cost  (one month can cost upwards of 30k), or are discharged from treatment prior to solidifying the gains needed to achieve lasting remission. Relapse rates for EDs are extraordinarily high (up to 50%) in the months following hospital discharge, largely due to inadequate treatment resources at lower levels of care. There is a dire need for interventions aimed to reduce risk for relapse in this critical time frame.

Peer support for other mental illnesses is widespread, effective, and feasible, including in areas of substance use and severe mental illness (Repper et al., JMH, 2011). Although peer mentorship for EDs has not yet been evaluated, there is a huge desire for it from the community: we conducted over 50 stakeholder interviews with eating disorder sufferers at all levels of recovery in Fall 2016, and they all stressed the importance of recovered role models in their recovery process. Should the program demonstrate usefulness, it is scalable and duplicable by virtue of being a volunteer-led, low cost program.  

We expect the proposed project will have a positive impact on beneficiaries in domains of ED symptoms and risk for relapse, ED related quality of life, co-morbid psychiatric symptoms, and long-term health care cost/utilization.  Our current program is designed as a research study to examine the relative usefulness of peer mentorship to another active program (social support) and a wait list, but all participants will receive mentorship of some type, either at the beginning or after the wait-list period. We are currently recruiting mentees who have been discharged from a higher level of ED treatment in the past 6 months.

Mentees’ attendance will be tracked and mentees will complete questionnaires pertaining to the acceptability of the program on a monthly basis - Feasibility and Acceptability

At the onset of the program on a monthly basis over the six-month program duration, and for six months after the program, we will administer the EDEQ to assess eating disorder symptom severity, and the EDQOL to assess eating disorder quality of life - Eating Disorder Symptoms

At the onset of the program on a monthly basis over the six-month program duration, and for six months after the program, participants will complete a health care utilization and cost survey. - Health Care Utilization and Cost

Despite it’s success in other mental illnesses, peer mentorship has not been evaluated in the ED context. We have developed an online mentorship training program that can be accessed from anywhere in the world, and mentees can be matched to a mentor via online video conferencing.  We are utilizing Recovery Record, the leading ED app, to pair mentors and mentees, where mentors are able to see mentee symptoms and behaviors in real time and provide in app feedback.   Finally, we have partnered with researchers at the Columbia University Medical Center to measure effectiveness via a randomized controlled study.

Communities of HEALing was designed by the eating disorder community. We are the first organization to utilize recovered volunteers to help others in recovery, and to emphasize utilizing non-experts in treatment.  This allows us to reach traditionally underserved communities unable to access treatment because of geographic isolation and high costs.

Recovery Record is a patient centric application that is currently used by over 500k people with eating disorders.  

We have partnered with researchers at the Columbia University Medical Center in order to deliver our pilot mentorship program in the context of a randomized controlled study. This design will allow us to not only provide peer mentorship to beneficiaries, but also evaluate whether this intervention improves outcomes compared to standard treatment or another social-based intervention.

Should the program demonstrate usefulness, it is scalable and duplicable by virtue of being a volunteer-led, low cost program. 

The proposed project will allow us to evaluate the effectiveness of peer mentorship for eating disorders and other psychiatric symptoms. We have already initiated discussions with insurance companies regarding the need for peer-mentorship and other services at low-levels of care. The proposed project will allow us to accrue an evidence base that will possibly engender expanding beyond our organization.

Once we have initial effectiveness data, we plan to apply for additional public (such as a National Institutes of Health grant) and private funding (such as insurance companies). 

Our two biggest challenges will be organizational growth (hiring the right people), and acceptability of the program to volunteers and participants.  So far, we've had success in both areas.  In particular, we hired a full-time Program Director and a full time Volunteer Director to manage the growth of our volunteer base and ensure the quality of our program delivery and training.

Additionally, between April and July, 2017, we matched 10 mentees with mentors. In addition to mentee’s generally positive qualitative feedback, preliminary data analysis showed that the majority of individuals who participated in mentorship experienced reductions in eating disorder symptoms.

https://www.fastcompany.com/3066952/eating-disorders-are-getting-the-silicon-valley-treatment

https://www.forbes.com/forbes/welcome/?toURL=https://www.forbes.com/sites/katevinton/2016/10/31/nonprofit-project-heal-raises-250000-from-silicon-valley-donors-to-fight-eating-disorders/&refURL=https://www.google.com/&referrer=https://www.google.com/

https://www.facebook.com/nytimes/videos/10151237390929999/

Solve leverages the best thinkers in the field to solve complex social problems at scale.  Project HEAL will benefit immensely from the guidance, mentorship, network, and financial support of this community.

Columbia University Medical Center, Recovery Record, UC San Diego Eating Disorder Center, Johnson & Johnson, SF 49ers, 30 eating disorder treatment centers across the United States, the National Eating Disorder Association

NEDA