Developing a community-led rare disease ELSI research agenda.

Background: Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.

Methods: This two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease.

Let's Talk About Antibiotics: a randomised trial of two interventions to reduce antibiotic misuse.

Background: Children with acute respiratory tract infections (ARTIs) receive ≈11.4 million unnecessary antibiotic prescriptions annually. A noted contributor is inadequate parent-clinician communication, however, efforts to reduce overprescribing have only indirectly targeted communication or been impractical.

Demographic Characteristics Among Members of Patient Family Advisory Councils at a Pediatric Health System.

Patient Family Advisory Councils (PFACs) are groups of patients, families, and clinical health system leaders collaborating to improve the quality, safety, and experience of care. Best practices encourage PFAC membership to reflect the diversity of the communities served. A cross-sectional survey was conducted from September 2019 to January 2020 collecting demographic characteristics of the members of a pediatric health system's 17 PFACs.