The failure of many patients with chronic conditions to correctly follow medical advice that they hope or intend to follow is a major concern, especially as effective long-term therapies for chronic conditions materialize. Some US healthcare providers have responded with strategies that involve implementing contracts with their patients, including provisions that may deny future treatments after continued nonadherence. This is among the first articles to explicitly discuss the ethics of patient contracts.
View Article and Find Full Text PDFPatient engagement in clinical research refers to the involvement of patients beyond the role of research subject. To date, the goals of patient engagement have not been clearly defined for each stage of the research enterprise, which, when viewed broadly, encompasses stages such as setting research priorities, interpreting and incorporating research results in clinical guidance, and translating study results into insurance coverage policies. This article presents a new framework for patient engagement by first describing the goals of patient engagement at each stage of the research enterprise and then establishing how to prioritize the types of patient expertise that are needed to achieve these goals.
View Article and Find Full Text PDFRationale: With improved survival into adulthood, the number of dedicated adult cystic fibrosis (CF) care programs has expanded in the United States over the past decade. Transfer from pediatric to adult CF programs represents a potential time for lapses in recommended health care.
Objectives: To describe variability in transfer between pediatric and adult CF care programs and to identify factors associated with prolonged gaps in care.