The Patient Voice in Atopic Eczema Guidelines: How Do We Make it Standard Practice?

Patient and caregiver involvement in developing clinical guidelines is widely recommended. However, among current atopic eczema guidelines, only a minority incorporates the patient perspective. Much of the general guidance on patient involvement can be applied to atopic eczema. However, there are specific factors to consider in order to embed sustainable patient involvement in the atopic eczema guideline development process. These include the selection of patients and caregivers to represent the heterogeneity of the disease and of the patient experience. The psychosocial impact of the disease suggests support requirements that enable patients to be equal partners with other stakeholders. The priorities and feedback of patients with atopic eczema can differ from those of healthcare professionals and are central to shaping the research and implementation that form part of a guideline cycle. Barriers to patient involvement in terms of resources or healthcare policy need to be addressed so that patients and caregivers can be active participants in developing guidelines that are culturally, racially, socially and geographically appropriate. We suggest that steps can be taken to facilitate patient involvement in patients and caregivers living with atopic eczema and offer a framework to support patient involvement as standard practice in guideline development.