Engaging Families in Care Guideline Development (November 2018)

On Wednesday, November 14, PPMD hosted a webinar on patient-centeredness of recently published endocrine care guidelines for Duchenne. Researchers from RAND Health Care and PPMD shared the results of their project that developed a new online method for engaging patients and their families and caregivers in the process of developing care guidelines. This presentation describes the new method, presented a list of recommendations that individuals with Duchenne and their families and caregivers considered to be patient-centered, and discussed the reasons why some recommendations did not meet patient-centeredness criteria.