A global snapshot of our community: The 2014 Annual Global Survey

The World Federation of Hemophilia (WFH) has begun collecting data from the national member organizations (NMOs) for the 2014 Annual Global Survey.

Each year, our members provide valuable data that provides a snapshot of the state of the global bleeding disorders community – the number of patients identified, use of clotting factor concentrates, complications of hemophilia (inhibitors and co-infections), and the delivery of care. This allows the WFH to focus its development efforts and prioritize planning.  For more information on how to submit data for the latest survey, please email [email protected].

The WFH released the 2013 Report on the Annual Global Survey in November 2014. The report contains information on almost 280,000 people with hemophilia and other rare bleeding disorders from 107 countries. In conjunction with the print and PDF versions of the report, online tools, which enhance the use and analysis of our data, are now available on the WFH website. This online component allows users to create customized graphs and charts using the most recent WFH data.

The Annual Global Survey reports are also useful to WFH NMOs. The data have demonstrated the effectiveness of starting national programs and providing even small amounts of safe clotting factor concentrates in improving health outcomes. It can also be used to support the continued provision of existing levels of care (e.g. demonstrating value for cost or long-term savings), to focus targeted outreach, and to guide decisions about where to allocate limited resources. This year, the WFH will be introducing a data entry system that will allow our members to directly fill out their survey information online.

The WFH will continue to expand on the repertoire of customizable online graphics. This initiative is a, part of an overhaul of WFH data collection systems that now includes real time, automated validation, customizable queries and the output of raw data for analysis with various software solutions. This system has allowed us to continue to improve the quality and comprehensiveness of the data we collect each year. We are working to make these features, and consequently the survey data, more useful and accessible for all of our members.

In the efforts to educate our community on the value of collecting good data, the WFH has also released the Quality Data Collection Fact Sheet. Quality data are extremely useful in advocating for better care for people with bleeding disorders. This fact sheet introduces the rationale for data collection, the criteria for quality data, the keys for successful data collection, and examples of how quality data collection can provide the foundation of effective advocacy. To download the fact sheet, please visit the WFH data collection webpage.