Table 5 Goals and strategies for advocacy, education, and legislation

Prioritize consensus building As the autism experience dramatically illustrates, the ability to unify (i.e., reach a consensus) and speak with a singular voice significantly enhances the likelihood of achieving the legislative, funding, and educational objectives of those who share a common enemy (e.g., autism)—and the same is true of eating disorders. Conversely, speaking with a splintered voice makes it difficult for those who are in a position to legislate, fund, and/or otherwise effect meaningful change to identify and respond to core issues and needs

Develop carefully tailored messaging Word selection, message framing, and a clear understanding of and sensitivity to the intended audience are critically important to being heard and achieving desired results in the legislative, corporate, academic, and public arenas that are indispensable to the achievement of the eating disorder community’s goals. The same is true with respect to the individual decision-makers and decision-influencers who are the intended and/or likely recipients of that messaging

Develop and work from a common set of data Advocacy, education, and legislative and funding initiatives are much more impactful if they are grounded in empirical data that is credible and readily defensible. For too long, the eating disorders community has been reliant on incomplete, anecdotal, and/or inconclusive data that only serves to: confuse, if not distort its intended messaging; convey a sense of disorganization; diminish the credibility of the community as a whole; and detract from the gravity of the situation

Make more effective and concerted use of technology The proliferation of social media platforms provides the eating disorders community with a ready and cost-effective means of reaching tens, if not hundreds of thousands of individuals and organizations from a single laptop in a matter of minutes. Exploring creative ways of harnessing and maximizing the use of these currently underutilized resources to further educational, advocacy, and legislative initiatives is and, in the years to come, will be critical to their success

Open cross-disciplinary lines of communication Two of the take-aways from the Summit were: (1) the well-spring of ideas that can come from providing a space in which diverse members of the eating disorder community (e.g., researchers, clinicians, academicians, advocates, people with lived experience, and family members) can freely express their thoughts; and (2) a sense of regret that there are too few opportunities to do so. Meaningful progress depends on making such cross-disciplinary exchanges (real or virtual) the rule, rather than the exception

Redouble efforts relating to diversity and inclusion There is a growing awareness that issues related to racial, ethnic, size, and cultural diversity, as well as gender identity and sexual orientation, have a significant impact on all aspects of an individual’s diagnosis, treatment, and recovery from an eating disorder. To the community’s credit, progress has been made when it comes to embracing and attempting to rectify those disparities. However, there is much work left to be done to reshape and refocus the predominate lenses through which these illnesses historically have been viewed to ensure that diverse populations gain increased visibility

Return to our collective roots It is easy given the busyness and daily demands of life and the often soul-depleting nature of eating disorders for those charged with advocating, educating, and/or promoting legislative initiatives on behalf of those who suffer from eating disorders to lose sight of the fact that we are fighting a common enemy (eating disorders) and are committed to a common goal (making quality care accessible and affordable to all eating disorders sufferers and working towards the eventual eradication of those illnesses). The same is true for those whose lives have been touched by eating disorders and who have made the study and/or treatment of eating disorders their life work. In that fight, solidarity should be our guiding principle

Consensus Building Convene a virtual summit meeting of representatives of the leading eating disorder advocacy organizations and stakeholders for a twofold purpose:

To commit to speak with a singular voice on core issues and emergent needs facing all eating disorder sufferers, including unique considerations of race, gender identity, sexual orientation, ethnicity, size, and/or age (e.g., the accessibility, availability and affordability of care; the need for evidenced-based standards of care; the need for more robust research and research funding; and the need for adequate and equitable treatment from insurers)

To reach a consensus on a specific platform of messaging that is fact based, data supported, narrowly tailored to the intended audience(s), apolitical, capable of ready adaptation to all forms of social, print, and video media, and highly compelling, together with a corresponding commitment that each stakeholder will push the messages out—consistently and enthusiastically—cognizant of the fact that doing so benefits all sufferers

Tailored messaging It is impossible to control, nor should any effort be made to control, the messages individuals choose to post on their social media platforms relating to eating disorders. However, those organizations who serve as the faces and voices of the eating disorder community as a whole have a heightened responsibility to ensure that the messages they create and promote are evidence-based, carefully framed, and reflect a clear understanding of and sensitivity to their intended audience(s) (i.e., those who are likely to “consume” them)

Those audiences include: state and federal legislators, corporate executives, insurance company representatives, frontline physicians and clinicians, private foundations, and wealthy individual benefactors—many of whom lack even a fundamental understanding of eating disorders and their life-threatening nature. They do, however, tend to be highly sophisticated and to have certain expectations with respect to advocacy and messaging when it comes to groups and individuals vying for their attention, their monetary and policy support and/or philanthropy—all of which are critical to the achievement of the eating disorder community’s goals. That being the case, that messaging cannot be relegated to those who lack the experience, discretion, sophistication, and communication skills required to maximize the likelihood that it will be heard and favorably acted upon. Instead, ideally, those charged with advocacy, education, and/or advancing legislative initiatives in the eating disorders community should retain and rely on professional publicists, media consultants, and marketing firms to assist them in formulating, tailoring, and properly disseminating the critical messaging referenced in the preceding point

Help facilitate the timely and efficient dissemination of critical research findings and data Eating disorder education and advocacy, as well as the promotion of legislative initiatives aimed at advancing the needs of eating disorder sufferers stand to benefit significantly from ground-breaking research, including the initiatives outlined in this Report, as well as the remarkable work that already has been and is being done in the U.S. and in a myriad of other countries around the world who are battling these insidious illnesses. The recent publication of the AED/STRIPED economic impact study is a prime example, especially with respect to identifying the estimated societal, health care, and personal economic costs of eating disorders in the U.S. However, the impact of these and other initiatives is only as great as the mechanisms that exist to facilitate its prompt and efficient dissemination to organizations and individuals who are in a position to make effective use of it in furtherance of its intended purposes and to effect change (i.e., legislators, corporate executives, insurance company representatives, frontline physicians and clinicians, elementary and secondary educators and administrators, private foundations, and wealthy individual benefactors). With proper guidance from researchers, those in the advocacy, education, and legislative initiative(s) community and their established distribution networks could be uniquely situated to assist in those efforts^a

More effective use of technology The importance of the effective, concerted, consistent, and proper use of technology to the achievement of eating disorder advocacy, education, and legislative goals cannot be overstated and, therefore, must be spearheaded by highly-qualified and highly-skilled professionals, especially as it relates to core (consensus based) messaging. That can be accomplished in one of several ways

First, the leading eating disorder advocacy organizations and stakeholders, working from a place of consensus, could contribute on a pro rata basis towards the retention of a full-time expert in the field to design and establish a game plan for implementing a comprehensive strategy for efficiently and cost-effectively disseminating critical messaging to the target audiences^b. Alternatively, NCEED could designate such an expert, who could be informed by the aforementioned stakeholders, since it already has ties to the target audiences and access to the requisite channels

Second, if budgetary constraints make full-time employment impossible, secure the services of the aforementioned expert for purposes of designing the strategy and training hourly employees and interns in each of the member organizations to execute that plan with the understanding that the consultant will be available on an as needed basis

Third, implement policies and procedures and, carefully, monitor compliance to ensure that those who have the access/authority required to post on the organization’s social media and other internet platforms understand what is (and is not) permitted in the way of messaging as it relates to core issues impacting all eating disorder sufferers

Cross-disciplinary lines of communication In addition to annual or semi-annual conferences at which stakeholders or their designees deliver formal presentations to other stakeholders, eating disorders community organizers and sponsors should focus on arranging in-person or virtual conferences aimed at promoting the free exchange of ideas and information among multi-disciplinary professionals with an eye towards: fostering more open lines of communication among the various disciplines; identifying and prioritizing gaps and goals needed to advance the core objectives of the eating disorders community as a whole; relationship and consensus building; providing opportunities for the next generation of treatment providers to benefit from the knowledge and wisdom acquired by long time leaders and practitioners in the field; affording those charged with advocating, educating, and advancing legislative initiatives with a broad-based understanding of cutting-edge developments and research in the field to further enhance their efforts. Simply put, where communication is concerned, the eating disorder community needs to reach beyond those who already appreciate the seriousness of these illnesses. It is time to shift the focus and the messaging (in a more concerted way) to those outside the eating disorder community, who not only remain largely underinformed about the magnitude and gravity of the problem, but in many instances are uniquely situated to be instrumental in effecting meaningful change once provided with a clear understanding of what change is needed^c

Greater diversity and inclusion Eating disorders do not discriminate, yet if the eating disorders community were to take an objective snapshot of the current landscape, it also would be forced to admit that those differences are not adequately represented in positions of influence in the eating disorder field. It is up to the eating disorders field to be intentional in reconstituting its own house to reverse that state of affairs. As importantly, it is undeniable that being different (i.e., not fitting the stereotypic mold of an eating disorder sufferer—affluent (or at least reasonably well insured), well-educated, white female) makes a difference when it comes to: the likelihood of being properly and timely diagnosed; the availability, accessibility, affordability, and quality of care; the chance of being treated by a provider who is sensitive to racial, ethnic, gender identity, sexual orientation, and/or cultural dynamics and/or nuances that may influence the recovery journey; and post-treatment support communities comprised of like-experienced and/or like-minded peers. That too, needs to change and the advocacy stakeholders can take a powerful and lead role in educating and advocating for that change

Back to basics Few professional and advocacy communities are populated with individuals and organizations whose fundamental purpose is (or should be) to one day “put themselves out of business,” but the field of eating disorders is one of them. And, ideally, one day that will happen (i.e., because of our collective efforts, eating disorders will be eradicated or their threat so minimal as to only need a fraction of the resources currently dedicated to fighting them). In the interim, however, all who warrior against these illnesses, especially those charged with advocating, educating, and/or promoting legislative initiatives on behalf of all those who suffer from eating disorders must not lose sight of the fact that: (1) we are all in this (and stronger) together; and (2) solidarity is where each of our journeys began and it is the light that will illuminate the path forward