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💙 Quote from a Lived Experience Representative from the Children & Young Persons workshop: “Relationship building is key before jumping into questionnaires. It’s important to reduce shame and build trust, particularly for people who feel vulnerable.”

💙 Theme 4: Doing no harm. The treatment process should help, not overwhelm or shame patients. The EDCRN platform allows participants to complete questionnaires in their own time, at their own pace.

💙 Quote from a clinician in the adult workshop: “When data collection isn't standardised, it not only affects the quality-of-care patients receive but also the quality of research that relies on that data.”

💙 Theme 3: A Balance Between Standardization and Individualisation. There is a need for standardised yet flexible data collection to personalise care for each patient. The questionnaires on the platform include optional q’aires for participants who find them particularly relevant

💙 Quote from a Lived Experience Representative in the adult workshop: “Autism screening should be part of eating disorders and assessment. Personally, that's my feeling.”

💙 Theme 2: A holistic approach. The EDCRN understands that eating disorders are a biopsychosocial condition, so we collect data on psychological, social and physical factors like trauma, autism, health conditions, weight stigma and food insecurity.

💙 Quote from a Lived Experience Representative in the adult workshop: “The other thing I think is quite important is the waiting time for treatment, because in my experience it seems to be the longer the wait is, the more severe symptoms tend to be by the time they get seen.”

💙 Theme 1: A mutually valued and beneficial collaboration. The data collected by ED services should be meaningful & help patients and others involved, so the EDCRN collects information, like waiting times, distance travelled for treatment, which patients have highlighted as issues.