Communities of HEALing

Recovery from an eating disorder doesn't happen alone

In America’s current cultural and political climate, mental and behavioral health are receiving more attention than ever. However, the national conversation has yet to address eating disorders (EDs) as a widespread and serious mental health problem. Roughly one in ten Americans of all ages, genders, race and ethnicities, and socioeconomic backgrounds suffer from an ED. Ten percent (10%) of sufferers will die from their ED, and another 30% will struggle with their illness for their entire lives.

The high mortality and morbidity associated with EDs stems in part from the fact that the prevailing model for treatment and recovery support is narrowly focused on one type of experience: acute clinical care in a residential or in-patient facility. Yet for the vast majority of sufferers, this type of treatment is not affordable because of insufficient insurance coverage, is not geographically accessible because treatment centers tend to be near major urban centers, and/or is not the appropriate intensity of intervention for their illness.

Project HEAL seeks to redefine how all people suffering from an ED get recovery support, not just those who can afford in-patient clinical care. Thus in 2017 we launched Communities of HEALing, a peer support and mentorship program designed to leverage community connectedness as a tool for healing.

COH works by recruiting and training recovered peers to support those in early recovery via three different connection points, each of which are 100% free. Participants select which element(s) works best for them: 1) weekly open support groups, 2) weekly affinity groups framed around identity markers above and beyond experience of an eating disorder such as people in higher weight bodies, male-identified people, people with a history of trauma, women experiencing menopause, immigrant Americans, low-income populations, people of color, etc. or 3) one-on-one online or in-person mentorship.

As a community-based and technology-enabled program, COH seeks to break down barriers to care by not only creating spaces that are geographically and financially accessible, but that are sensitive to all lived experiences as well. By focusing on peer relationships, it has the potential to connect with groups that are underrepresented in eating disorder treatment, including low-income populations, the LGBTQ community, people of higher weight bodies, and people of color.

We designed Communities of HEALing based on the lived experience of our network of some 40,000 people spread across our 40 chapters worldwide and online. When we surveyed them on what made the difference in their recovery, they answered unequivocally: personally knowing other people who have been there. They said they needed to connect with people who offer living proof that recovery is not only possible, but worth fighting for.

The predominant model of eating disorder treatment and recovery offers no space or time to make such connections. By introducing peer support into the eating disorder care landscape, Project HEAL intends to break open the possibility of healing of scores of people, especially underserved and marginalized populations, who have never viewed recovery as part of their reality.

Communities of HEALing represents a novel expansion of who exactly constitutes a frontline health worker in the ED space. The current model privileges doctors, nutritionists, psychologists and other formally trained medical staff. Yet recovered individuals should be valued experts because they intimately understand what supports really work. By engaging recovered individuals to offer peer support for those still in active recovery, Communities of HEALing drastically expands the availability of frontline health workers. This is innovative because although peer support has had success in other mental health fields, it has not been rigorously explored, much less systematically implemented, in EDs. 

Communities of HEALing uses online training to prepare its mentors, allowing us to keep overhead relatively low while training many volunteers at once. The 35 hours of course content ensures volunteers are grounded in an understanding of common themes and struggles in eating disorder recovery generally, as well as best practices in peer support.  Additionally, 1:1 mentorship can happen via Skype and FaceTime, ensuring access for all.  Finally, mentors and mentees are linked via Recovery Record, the leading app in this space, where mentors can see mentee symptoms and behaviors in real time and provide in-app feedback.

Over the next 12 months, Project HEAL seeks to expand the Communities of HEALing pilot and conclude a randomized control trial currently underway in partnership with

the Center for Eating Disorders at The Columbia University Medical Center. This study will allow us to evaluate whether this intervention improves outcomes compared to standard treatment or another social-based intervention. Our primary outcome measures include: feasibility and acceptability, reduction in eating disorder symptoms and improvement in quality of life; health care costs and utilization, and program adherence. 

With the Communities of HEALing pilot well underway, Project HEAL is seeking every opportunity to support growing this program further. We see a path forward that by 2021, COH can operate via 120 local support groups across the country with nearly 5,000 attendees, along with 1,500 people receiving peer individual mentorship. Project HEAL designed COH to launch and operate at economies of scale; it leverages low-cost online tools and volunteerism and costs approximately $30,000 to expand to a new site.

Participants have been primarily recruited through social media. Additionally, we have partnerships with over 30 eating disorder treatment centers and over 500 outpatient providers across the US who refer patients.

Project HEAL has 40 active chapters across the US interested in launching COH. COH begins by conducting a community needs assessment to understand the demographic makeup, eating disorder landscape, and desires of local clients.  We then recruit a diverse group of mentors, and train them. We have partnered with We Work to host our in-person support groups, and 1:1 mentee pairs meet in the community or online via video conferencing.

As a new pilot, we are currently running Communities of HEALing support groups in five cities (New York, Boston, Pittsburgh, Los Angeles, and San Francisco) and serving  approximately 30 people in each city, for a total of 150 beneficiaries.  We’re also serving about 40 1:1 mentees.  Finally, we’ve trained 40 mentors, who report that their recovery is further strengthened and solidified by the program.

In the next 12 months, we plan to train 125 Recovered Mentors, serve 200 mentorship beneficiaries, and have 600 local support group participants across 15 sites. While recovery is not a linear process and everyone’s experience is unique, we can say with confidence that participants’ involvement with COH will constitute major steps forward in their journey to healing. We see a path forward that by 2021, COH can operate via 120 local support groups across the country with nearly 5,000 attendees, along with 1,500 people receiving peer individual mentorship. 

Our core staff have extensive experience in training, design thinking, volunteer management, and research design.  Additionally, all staff are personally recovered from eating disorders and have a personal passion and commitment to the program. The team has a track record of attracting resources needed to succeed: Our eight-member board includes c-suite leaders from Johnson & Johnson, Lane Bryant, and the San Francisco 49ers, our clinical advisory board is comprised of the leading researchers in the field, and we’ve attracted support from notable supporters like Arianna Huffington and former NIH director Tom Insel.

Project HEAL’s revenue model currently includes a mix of contributed philanthropic income from foundations, corporations, and individuals. Individual giving is a particular strong suit for us because our constituents are readily inclined to donate given the positive impact Project HEAL’s programs have on their lives and/or their loved ones. We are currently building out a more robust grants program, and we host a major annual gala event that nets six-figures.

Beyond contributed income, Project HEAL also receives significant in-kind contributions in the form of treatment grants from its partnerships with clinical care facilities. Additionally, we are exploring opportunities for fee-for-service reimbursements from insurance companies, as mentioned above.

Our revenue mix positions us for long-term sustainability and expansion because we are not overly reliant on any one revenue source to operate; we are balanced between various sources of contributed philanthropic income, and we have earned income opportunities in the way of fee-for-service. Project HEAL is also sensitive to building our operating reserves so that we maintain both the stability and flexibility we need to undertake new growth.

I’m currently a Resolution Fellow and Forbes 30 under 30 social entrepreneur, and both of these communities have been impactful in furthering our work. The biggest benefits have been the connections I’ve developed and the network of advisors.  From my research and conversations with others in the field, the Solve Fellowship will provide access to fantastic mentors, technical partners, and potential funders to accelerate our work.  I’m particularly excited to have mentorship of technical advisors who can help us think about the necessary technology to scale our program, along with advisors with experience forming insurance partnerships.

The health care landscape is changing drastically, with payers increasingly interested in value-based care and cost-effective, innovative solutions like Communities of HEALing.  We are beginning to explore how we best position our value to payers, and create sustainable partnerships that are mutually beneficial.  Working with Solve advisors who have expertise and knowledge in the health care field will be immensely helpful.  Additionally, we would benefit from advice surrounding how to best leverage technology to scale the program.