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A New Dawn For Eating Disorders Research

By Judy Krasna, F.E.A.S.T. Executive Director

I confess, I have a personal love-hate relationship with eating disorders research. Obviously, I am gratified that there are researchers out there dedicating their careers to working in the eating disorders field. However, it frustrates me greatly to hear about research that doesn’t translate into practice or aim high enough to broadly improve outcomes for people suffering with eating disorders.  There is so much improvement needed in the field as a whole. There is so much that we just don’t know about eating disorders, and so much research that could be done to identify the areas of greatest need and then work to address unknowns or deficiencies in those areas. Instead, all too often, I find myself reading research that either proves things that I perceive as obvious, that doesn’t have enough practical application, or that seemingly ignores the burning issues that families encounter every single day. I have always felt that if people with lived experience were included in eating disorders research, we would both see and feel dramatic positive change.

I’m not an academic, I’m not a scientist, and I’m not an intellectual. I am a mother–an expert by experience–who judges the quality of the eating disorders research field through one lens only: Is it addressing pressing clinical need? Does it relate to the gaps in diagnosis and treatment that deter recovery? Can it help reduce the risks of developing an eating disorder or improve early identification and intervention? Will it get the mortality rate down?

It is my belief that once we are at a point when the efficacy rates of treatment have greatly improved, when the range of effective, evidence-based treatments is broader, when the recovery rate from all eating disorders is significantly higher, when the duration and severity of illness is lower, when eating disorders are being diagnosed and treated earlier, when we understand so many of the unknowns that impact the ability of a person to recover, or reduce the chances of a person developing an eating disorder in the first place—then, we can move on to the margins, to the research that is related to interesting ideas and theories. But not now, especially with eating disorders research being so woefully and severely underfunded.

So when I saw the news about an Australian initiative to identify the top 10 priorities in eating disorders research that included people affected by eating disorders and carers using the James Lind Alliance process, which I have been a fan of for years, I was very excited. In my very humble opinion, the first step to effective research is knowing what we don’t know. The priorities looked spot on to me in terms of what I see on a daily basis as what we don’t know, or what we need to know more about in order to get more people to the recovery finish line. I love that one of the priorities is “do no harm” and addresses increasing the positive impact of treatment and reducing the negative.

My excitement was compounded when I read further and discovered that $13 million (Australian dollars) was awarded to the University of Sydney to develop a national eating disorders research center, a national consortium led by the InsideOut Institute for Eating Disorders, to address these priorities.

The collaborative element of this research center, which includes people with lived experience, is encouraging to me. I hope that it represents a new trend, and a new dawn. Research needs to be informed by people with lived experience. Our input makes the research more robust, more valuable, more useful, and more potent. Perhaps most importantly, and again in my opinion, it makes research more relevant. As parents, we desperately need eating disorders research to be relevant.

Change doesn’t happen overnight. The timeline on this project is 10 years. But the potential for sustainable, productive, and life-changing progress in the eating disorders field is absolutely staggering.

This news has truly made me happy, given me hope, and filled me with optimism that the winds of change are blowing hard. I hope that it does the same for you.

Way to go, Australia!

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8 Comments

  1. Ros

    Yes, this news here in Australia is very timely with the dramatic increase in ED’s since COVID.
    Judy, your words of what’s needed are strong and oh so apt.
    As a parent of a daughter with an ED my tolerance and enthusiasm for the “interesting” but esoteric is minimal. I want research and therapeutic practice that truly values and is informed by the contributions of those with lived experience. Interventions that “do no harm” – parents and carers have much to contribute

  2. Gwen

    Pretty amazing, Judy. Thank you for highlighting this. I just hope and pray that this will carry over into more and more initiatives like this one.

  3. Sandy

    I love the graphic, and I’m thrilled to see that the first four of the 10 are about prevention and early detection. I agree there has to be research and focus there, just like any illness. I imagine preventing EDs or catching them far earlier, will save countless families the horrors many of us have endured / are enduring.

  4. Christine

    As a parent with lived experience and an academic nurse scientist, I plan to devote my future research to the needs of those with eating disorders. Where to start?! Thank you for posting.

  5. Jessica Setnick

    I hadn’t seen that before and it’s fabulous. Thank you for sharing.

    Related to your frustration about research, you’re not alone. There is an huge difference between research that helps the world vs. information that’s seen fit to publish in a journal. Many thanks to the researchers who work hard to frame their studies to provide usable information. But there are precious few initiatives or resources aimed toward the actual work being done in the field. There are thousands of professionals doing great work who don’t have time or desire to stop caring for individuals with eating disorders to write down what we already know to be obvious, as opposed to graduate students who don’t have any experience in the field but have time to do esoteric research and write it up for publication. Imagine being told there is no “evidence” for your work simply because you haven’t stopped working in the trenches long enough to put what you’re doing every day into the format required for publication. Our patients and their families are our evidence, and that’s good enough for us, but it’s not good enough to advance the field, and that’s a problem that needs to be solved. How can we bring together the individuals doing amazing work and the individuals experiencing eating disorders and recovery with the people with the time, funding and skills to make the information fit for publication? Otherwise “evidence” of unclear practical use will continue to be published and the actual things that are making a difference may not.
    Respectfully,
    Jessica Setnick

  6. Jessica Setnick

    I hadn’t seen that before and it’s fabulous. Thank you for sharing.

    Related to your frustration about research, you’re not alone. There is a huge difference between research that helps the world vs. information that’s seen fit to publish in a journal. Many thanks to the researchers who work hard to frame their studies to provide usable information. But there are precious few initiatives or resources aimed toward the actual work being done in the field. There are thousands of professionals doing great work who don’t have time or desire to stop caring for individuals with eating disorders to write down what we already know to be obvious, as opposed to graduate students who don’t have any experience in the field but have time to do esoteric research and write it up for publication. Imagine being told there is no “evidence” for your work simply because you haven’t stopped working in the trenches long enough to put what you’re doing every day into the format required for publication. Our patients and their families are our evidence, and that’s good enough for us, but it’s not good enough to advance the field, and that’s a problem that needs to be solved. How can we bring together the individuals doing amazing work and the individuals experiencing eating disorders and recovery with the people with the time, funding and skills to make the information fit for publication? Otherwise “evidence” of unclear practical use will continue to be published and the actual things that are making a difference may not.
    Respectfully,
    Jessica Setnick

  7. Denise

    It is such a relief to read your thoughts about research in this area. As a mum of two teenage girls just recently diagnosed with eating disorders I sometimes manage to trade my sleeping time with getting me updated on the topic. The practical output on this quest is often marginal and leaves a disappointing aftertaste. Having worked as a food scientist many years ago makes me even more realise now how much potential has been wasted. I put my own thesis in that bin. Anyhow, better now than never. And as an unbeatable optimist I see exiting change on the horizon.
    Thank you for sharing your thoughts. It made my day!

  8. Helly Barnes

    This is important research planned, assuming they do it well!
    Like you, but as an adult who had an eating disorder for well over a decade, I’ve been frustrated that treatment is ‘evidence based’ but if you don’t do the research into the right areas or approaches, you will never get meaningful evidence and from there effective treatment!
    Too many of us have been harmed by treatment and had to find our own way to recovery and that’s not the way it should be.
    I truly hope that this Australian initiative makes a difference (gotta love the Ozzies!).

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