In October 2016, the World Federation of Hemophilia (WFH) hosted its first workshop on data collection in Johannesburg, South Africa. The “Collection and Use of Data in Bleeding Disorders” workshop highlighted the value and importance of data collection and provided attendees with guidance on how to use data to better advocate for the care of people with inherited bleeding disorders. The workshop also showed attendees how collaboration can help enhance global data collection, and ultimately, support the bleeding disorders community worldwide.
The workshop program was based on four newly designed modules that were developed and reviewed by members of the WFH Data & Demographics Committee. Jamie O’Hara—an expert facilitator in the field of health economics—was invited to lead the sections on data-driven decisions, health economics, policy, and health technology assessments.
Twenty-three representatives, from 20 sub-Saharan African national patient organizations, took part in the two-day workshop. The enthusiastic participation of the patient leaders made the workshop a resounding success. One member noted that, “I never considered the collection and keeping of data as a useful resource. But after the workshop, I have learned that it is the single most important tool that we need to achieve all the goals and visions of our NMO [WFH national member organization].”
The WFH hopes workshop participants came away from the event motivated and better equipped to handle data collection issues in their own countries.
The WFH thanks Shire for making the “Collection and Use of Data in Bleeding Disorders” workshop possible.