Edwin Goh, Vice-President, Hemophilia Society of Malaysia, opened the, “Measuring and Improving Quality of Care for People with Bleeding Disorders” workshop held in Kuala Lumpur—the 2020 WFH World Congress host city—by warmly welcoming those in attendance. The workshop brought together patient leaders and healthcare professionals to hear from a diverse group of speakers about how data collection techniques support resilient and effective patient advocacy programs.
Donna Coffin, WFH Director, Research and Public Policy, provided an overview of two important WFH data collection initiatives: the Annual Global Survey and the World Bleeding Disorders Registry. Renchi Yang, MD, of China and Flerida Hernandez, MD, of the Philippines followed with presentations about their countries’ data collection efforts and the challenges they face in both data collection and advocacy. Other participants then started sharing their own experiences freely, with many noting they faced similar challenges advocating for better patient care.