Incorporating the patient voice and patient engagement in GOAL-Hēm: Advancing patient-centric hemophilia care.

Jonathan C Roberts Michael RechtSarah E GonzalesJustin StanleyMichael DenneJorge CaicedoKenneth Rockwood

Published in: Research and practice in thrombosis and haemostasis (2022)

By listening closely to patients and caregivers, we refined GOAL-Hēm to better capture the experiences of PWH, enhance content validity, and augment implementation strategies. Incorporating the patient voice is integral to developing patient-centered outcome measures.

Keyphrases

case report
healthcare
palliative care
primary care
newly diagnosed
ejection fraction
pain management
patient reported