Amman hosts Good Governance, Leadership, and Data Collection workshop

From September 7 to 9, 2017, participants from 17 Eastern Mediterranean countries arrived at Amman, Jordan for a three-day workshop hosted by the World Federation of Hemophilia (WFH). The workshop, entitled “Good Governance, Leadership, and Data Collection” was attended by thirty-four representatives from national member organizations (NMO) and healthcare professionals.

The first day and a half was dedicated to good governance and leadership. Brian O’Mahony (Ireland) and Bradley Rayner (South Africa) expertly guided the group through sections on good governance, organizational development, action planning, the principles of advocacy and NMO relations with pharmaceutical companies. This first part of the workshop included group work activities such as advocacy role playing exercises.

A highlight of the workshop was an action-planning group activity. Small groups developed lists of priorities for hemophilia care in the Eastern Mediterranean region. This was brought back to the larger group to consolidate and vote on priorities. The 17 countries concluded that the top three priorities for the region were the following:

  1. Creating a national registry in each country
  2. Increasing awareness of hemophilia
  3. Engaging patients in leadership positions

The following day and a half focused on data collection. This second part included sessions on the basics of quality data and the data collection cycle. It also focused on data reporting, including national patient registries, the WFH World Bleeding Disorders Registry, and the WFH Annual Global Survey. Jamie O’Hara (U.K.) facilitated the third and final day, with an overview of data driven decisions and the basics of health economics.

The workshop would not have been possible without the enthusiastic participation and engagement of the NMO representatives and healthcare professionals. Each of the 17 countries delivered detailed country presentations and took part in case studies. Participants were pleased to share and learn from each other’s experiences and network. One of the attendees remarked that the main highlight of the workshop was the sense of teamwork and cooperation: “Participation was excellent, and everyone took part and was engaged.” NMO patient leaders and doctors spoke about returning home and sharing the lessons learned with their community.

The WFH thanks Shire for making the Data Collection portion of the workshop possible.