Table 4 Goals and strategies for research and research funding
Short-term goals | |
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Change conceptualization of eating disorders • Introduce and begin to validate the concept of eating spectrum disorders (ESD); encourage researchers to consider what full dimensional classification of eating pathology would look like. This would include research on symptom-based classification and the interaction of symptoms with treatment • Challenge categorical distinctions (e.g., disordered eating vs. eating disordered; recovered, partially recovered, not recovered; AN binge/purge vs BN; binge-eating with dieting vs atypical AN; AN, restrictive with low insight vs ARFID) and work toward dimensional assessment of these outcomes • Advocate/lobby that eating disorder cognitions and behaviors be assessed in current studies examining other psychiatric patient populations such as mood, anxiety, and substance use disorders. Currently, we believe that because eating disorders are generally only evaluated and considered by researchers within this field, the impact of ESD on other mental illnesses is missed. This could look like a supplement for existing NIMH grants, and would be particularly helpful if targeted to existing large-scale studies in addictions and mood disorders Bridge the clinical-research gap • Develop a menu of standardized self-report measures that are routinely used pre/post and, optimally at follow-up across treatment centers and with other providers of ESD care. Suggested possible measures: EDE-Q [17], PHQ-8 [18], GAD-7 [19], demographics, weight, height. Recording if patient aware of weight or not for any clinical treatment setting or study. This development should include exploration of existing and past initiatives, including the NIH Assessments/Toolkit for Eating Disorders Answer fundamental questions • Expected treatment course/symptom fluctuations • How does clinical course vary based on the specific ESD diagnoses vs. clinical symptoms? • Tracking eating symptoms amongst the majority of people with eating disorders that never need intensive/inpatient care for an eating disorder • Determine when it is appropriate to transition between levels of care and how long is needed for an appropriate course of treatment Improve dialogues between clinicians and researchers • Provide pre/post prints freely available to clinicians • Link the annual EDRS and ICED meetings to improve attendance at both and allow researchers to attend more generalist and/or related specialty conferences. Linking EDRS and ICED (e.g., have EDRS precede ICED in the same location) will reduce both the costs and carbon footprint for those who attend both conferences, as well as free up time Improve attention to issues of diversity in ESD research • Ask ESD journal editors to require that all studies report a full breakdown of race/ethnicity, gender identity, and socio-economic status • Replicate existing findings in diverse populations • Create library of results needing replication or extension into other populations • Offer mentorship through AED or EDRS to help scholars frame replication studies that are adequately powered and designed to confirm or refute initial study findings • Encourage researchers to start studying low-cost, scalable interventions in conjunction with clinician networks | |
Improve attention to issues of diversity in ESD research • Ask ESD journal editors to require that all studies report a full breakdown of race/ethnicity, gender identity, and socio-economic status • Replicate existing findings in diverse populations • Create library of results needing replication or extension into other populations • Offer mentorship through AED or EDRS to help scholars frame replication studies that are adequately powered and designed to confirm or refute initial study findings • Encourage researchers to start studying low-cost, scalable interventions in conjunction with clinician networks Accept comorbidity as norm in ESD • Move into more consistent dimensional assessment of eating pathology in conjunction with tracking anxiety, depression, and substance use disorders • Work with NIH to add funding mechanisms that support collection of eating pathology data for existing studies of depression, anxiety and substance use disorders • Broaden our engagement with NIH study sections and staff (e.g., identify study sections that are more amenable to investigation of comorbidity and dimensional assessment so that such studies can be routed to these study sections) • Educate NIH reviewers to accept real patients rather than perfect patients without comorbidities, as well as patients without a ‘strict’ diagnosis. Disseminate information to eating disorder researchers about NIH study sections that welcome and/or are open to dimensional approaches to eating disorders and those that model comorbidity. Some example NIH study sections include BRLE, BGES, PDRP Retaining/building new researchers in ESD and reducing insularity • Educating researchers at conferences on how to get papers published in generalist journals • Educating researchers on how to review for generalist journals • Approach editors of key journals about initiatives to publish both negative and replicated findings • Begin creating an action plan for a new NIH institute focused on behavioral science in the area of mental health |
Long-term goals | |
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• Change DSM-5 from Eating and Feeding Disorders to ESD, or alternative conceptualization that can cover all types of eating disorder behaviors and related cognitions Create centralized ESD research consortium • Input Clinical Data—programs, outpatient clinicians, or patients themselves could send standardized data (5 or 6 recommended measures) at regular intervals creating access to standardized and large datasets (i.e., big-data) to answer relevant clinical questions • Individual researchers can sign onto bigger projects • Commitment to funding a larger range of eating disorder researchers so that we broaden the researcher base and bring more creativity to the table Establish key measures in assessment of ESD • Identify other alternatives for determining “health” instead of weight/BMI (e.g., Total T3; Leptin) and determine when focus should be on weight and BMI in addition to other metrics. Ensure (and develop) metrics for determining “health” that are appropriate for diverse and underrepresented persons • Bridge and engage with obesity research to ensure assessment of eating disorder behaviors in their research. While we recognize there may be concerns about these collaborations, to strengthen the science of eating disorders, as well as decrease weight stigma and biases in the obesity field, the best approach will be collaborative, in which we draw from the ‘best’ of each field, such that both fields can benefit mutually from each other Expand funding base • Challenge funding sources to move away from categorical diagnosis • Create new sources of funding that will let science and clinical questions drive science (as opposed to NIMH funding priorities) • Create a new NIH institute or alternative funding mechanism at a similar level to address the consensus research points • Find ways to use CMS) database to promote evidence-based outpatient care Broaden base of ESD researchers • Identify generalist journals that need or could benefit from ESD aware professionals on their editorial boards; develop a plan to get those representatives on the boards • Support movement of researchers in ESD into and back from other broader areas (e.g., anxiety, depression, behavioral genetics); encourage researchers in other areas (mood, trauma, addiction) to conduct studies in ESD and support those researchers to obtain publications/grants in ESD |
Strategy | Obstacles | Navigation |
|---|---|---|
Build support for ESD by: • Conducting a literature review (and/or meta-analysis) to set the stage for discussion • Encourage researchers to collect data to create an empirically supported dimensional classification system for ESD • Obtaining support of major players: APA (for DSM), AED, CMS, NIH, NEDA, iaedp, residential treatment programs (both for- and not-for profit), and HiTOP • Work with EDRS and AED to build support for a combined meeting • Work with REDC, AED, iaedp, NEDA, and treatment centers to begin standardization of measures and open publishing of outcome data to create a centralized EDS research consortium • Build or enhance workshops in iaedp, EDRS, AED, etc. on team science and collaboration across treatment centers, medical providers, and scientists to achieve united goals • Work with conferences and organizations to create education and training for researchers and trainees on how to obtain ESD funding, how to be on NIH study sections/identify study sections appropriate for one’s work, how to identify program officers whose programs fund eating disorders work (e.g., Janani Prabhakar, Mark Chavez, Julia Zehr, Mary Rooney), publish in more journals, and how to do open science | Change is hard. People like the status quo Retraining/re-educating on ESD may be needed Some may be committed to the existing but narrow definitions of AN/BN/BED The lack of funding and financial prioritization available to create and build these initiatives If the field does not grow by inviting others in, then slices of the pie will be too small for those here now Tensions within the field between academic and for-profit treatment centers | Identify concerns and obstacles Lobby players to support conceptualization Develop new funding streams to support innovative/spectrum approaches (i.e., invite and pay researchers to join ESD consortium standardization for big clinical questions) Collaborate with members of the ESD field who have tried to accomplish some of these goals in the past to learn from their experiences |