WBDR: a strong foundation for advocacy

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.

Edwin Goh, Vice-President, Hemophilia Society of Malaysia

 “Access to accurate data enhances our outreach and advocacy capacity. I believe the work we did together here in Kuala Lumpur will lead to better care and treatment for the bleeding disorders community in the Asia Pacific region.”

Bishesh Sharma Poudyal, MD, of the Civil Service Hospital in Kathmandu, Nepal, then shared how the collection of data allowed patients to show the government the severity of the issues facing patients. This, he believes, is a first step towards convincing them to buy factor instead of having to rely on donated medication for the needs of patients. To see a video of Poudyal in conversation with Donna Coffin, click here). Poudyal’s success reinforced the notion of how accurate data can be used as a powerful tool in support of patient advocacy efforts. However, the question remained of how to mobilize data to influence decision makers in differing countries. Robert Gillespie, Hemophilia of Georgia Region IV South Coordinator, responded to this question with an interactive session on preparing and delivering a message to decision-makers. Group discussions and a step by step self-assessment exercise led by Robert were key to the success of this session, and formed the basis for a draft advocacy strategy created by each country group.

The WFH Research and Public Policy team would like to thank WFH board members Glenn Pierce, MD, PhD, WFH Vice President, Medical, Barbara Konkle, MD, and Magdy El Ekiaby, MD, as well as Laboratory Science Committee member Sukesh Nair, MD, for their invaluable contributions to this successful event.

The WFH wishes to acknowledge the financial contribution of Hemophilia of Georgia. Without their support and shared belief in how our community can use accurate data to improve patient’s lives this workshop could not have taken place.