Hemophilia Federation of America has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute for its FIRST (Females in Research Sharing and Translation) Project to improve opportunities for women to be engaged in patient-centered research.
The capacity-building grant will support HFA’s FIRST Project which will begin by identifying how women are currently involved in research and discovering any barriers that exist to their participation. Following the initial step of identifying female involvement, the aim of HFA’s FIRST Project is to increase female influence and engagement in the development and implementation of research and the dissemination of research results, which ultimately affects the clinical care of women with bleeding disorders.
Through HFA’s programs, HFA has identified women are eager to participate in patient-centered outcomes research and research which effects clinical care, but they’re lacking the opportunities to be involved, especially in research design, which tends to be geared toward male participants. The FIRST Project will include focus groups of women in the bleeding disorders community and its 50 member organizations.
PCORI awards the Eugene Washington PCORI Engagement Awards to support projects that encourage active integration of patients, caregivers, clinicians and other healthcare stakeholders as integral members of the patient-centered outcomes research/clinical effectiveness research (PCOR/CER) initiative.
Women with bleeding disorders interested in participating may visit www.hemophiliafed.org/research to learn more or contact research@hemophiliafed.org.
