Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study.
Martijn R BrandsLotte HavermanJelmer J MuisMariëtte H E DriessensStephan MeijerFelix J M van der MeerMarianne de JongJohanna van der BomMarjon H CnossenKarin C J FijnvandraatSamantha C GouwPublished in: JMIR human factors (2024)
People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition.