Researchers are often unaware of how their findings will be used by treatment guideline developers, while service users and care professionals may not fully understand the limitations of the processes and decisions involved. When the National Institute for Health and Care Excellence (NICE) published its updated treatment guideline for depression in May 2022, it was five years behind schedule. The delay was due to the extraordinary persistence of a group of stakeholders, supported by prominent UK MPs and peers, who challenged NICE to address major methodological flaws in previous versions. Never before had a draft treatment guideline received such intense scrutiny and detailed attention. The stakeholder coalition warned that without necessary changes, the guideline would result in misleading treatment recommendations.

In this talk, Dr Felicitas Rost will discuss the stakeholder campaign she initiated and led. She will begin by briefly summarizing the initial methodological issues, outline how stakeholders’ knowledge and expertise was used to advise NICE on necessary changes, and describe how these were received and addressed. Although not all key issues were resolved satisfactorily, this five-year campaign was both crucial and successful. The changes implemented by NICE are expected to lead to significant improvements in care for individuals with depression as the guideline is put into practice.