Point of Interest
Mark Skinner, President/CEO of the Institute for Policy Advancement, USA, and David Page, National Director of Health Policy at the Canadian Hemophilia Society, Canada, talk about the importance of data collection and patient-reported outcomes for enhancing the patient voice in healthcare decision-making. They discuss one data collection project in particular, called PROBE, and highlight how it can be used as an evidence-based tool by advocacy groups.
NEW* Available languages are added on "Participating organization" page!
Visit PROBE at virtual NHF's Bleeding Disorders Conference 2020! Virtual Conference will be held August 1 - August 8, 2020.
New article has been published in Haemophilia Journal: Exploring regional variations in the cross‐cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study