We identified five themes concerning participants’ experiences of health care and related unmet needs:1) Desire for information and for greater access to timely and personalized care to gain a sense of control oftheir disease; 2) Desire for community (sharing experiences with others) to fulfill practical and emotional needs;3) Potential roles of an online self-management website in self-empowerment, behavior change, self-managementand health care delivery; 4) Importance of a patient-centered perspective in presenting content (e.g. commonassumptions, medical nomenclature, language, messaging, sociocultural context); 5) Barriers and facilitators to use ofa self-management website (including perceived relevance of content, incorporation into usual routine, availabilityfor goal-directed use, usability issues).