From September 7 to 9, 2017, the World Federation of Hemophilia (WFH) hosted a three-day workshop on “Good Governance, Leadership, and Data Collection” in Amman, Jordan. An integral part of the program was ensuring that participants from the 17 Eastern Mediterranean countries had an opportunity to share their lived experiences.
The workshop featured a case study on data collection efforts, where Masood Fareed Malik, a community advisory for the Pakistan Hemophilia Patients Welfare Society, and Murtadha Hasan, MD, the Vice President Medical for the Iraqi Hemophilia Association, shared the experiences of their respective WFH national member organizations (NMOs).
The Pakistan Hemophilia Patients Welfare Society became an NMO in the year 2000 and has since made impressive strides with their data collection efforts. Through the WFH Advocacy in Action Program, Pakistan designed its patient registry using WFH Annual Global Survey (AGS) parameters. With additional funding from other partners, they were able to refine it and set it up as an established patient registry with informative data visualization tools to share with the public (to find out more, visit www.hemophilia.org.pk). Although the registry is an important tool, behind the registry is a process focused on quality data collection. Malik’s presentation in Amman highlighted the process followed in Pakistan, including its focus on a strong sense of ownership for data collection in the community.
For the Pakistan Hemophilia Patients Welfare Society, quality data has led to quality results. Based on this experience Malik recommended that all NMO stakeholders take responsibility for good data—from patient leaders, to doctors and the ministry of health. He demonstrated that quality data could be used to monitor trends in the healthcare system, determine priorities when allocating resources, and establish distribution mechanisms, including for example, for WFH Humanitarian Aid donations. He highlighted the power of data, and the importance of sharing results with primary stakeholders and using data for strategic decision making and advocacy efforts. As a takeaway message, he stressed that it has been important for Pakistan’s association to empower data collectors by providing them with training. Beyond national efforts, Malik recognized that Pakistan’s data collection efforts were contributing to better global data. “We are giving a face to the hemophilia community,” he explained.
Murtadha Hasan, MD, shared the case for strong data collection at the Iraqi Hemophilia Association. Since becoming an NMO in 2004, the Iraqi Hemophilia Association has been reporting data to the AGS every year, and they demonstrated that their efforts have had an impact on their community: there has been a steady increase in patient identification from 624 People with Hemophilia (PWH) in 2004, to 1,346 PWH in 2016.
Hasan said that data is the “cornerstone of everything” at the Iraqi Hemophilia Association. He explained that data enables NMOs to plan the strategy of hemophilia care in Iraq, provides information on the socio-economic condition of hemophilia care in the country, and it is a powerful tool for evaluation. In terms of advocacy, Hasan explained that negotiating with the Ministry of Health is much more productive when NMOs bring hard scientific data to the table.
The WFH would like to thank Masood Fareed Malik and Murtadha Hasan for sharing their stories and continuing to reinforce the global community efforts to strengthen data collection.
The WFH thanks Shire for making the Data Collection portion of the workshop possible.