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!