Hemophilia Federation of America has received its second Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute, which will be instrumental in understanding more about patient-centered research, this time geared specifically toward women within the bleeding disorder community.
HFA鈥檚 FIRST Project, an acronym for Females In Research Sharing and Translation, is aimed at improving opportunities for women in the bleeding disorders community to be engaged in patient-centered research by understanding barrier and facilitators they may have experienced.
The FIRST Project will:
- Identify how women are currently involved in research and discover any barriers that exist to their participation.
- Identify what would get them engaged in research.
- Create a community-based research network (CBNR) including women from our community and other key stakeholders to change and implement the more effective approach of patient centered research in our community.
The FIRST Project will ultimately give women more involvement in patient-centered research, which will positively affect the clinical care of all women with bleeding disorders in the future.
Why is this important?
While we see medical advances occurring in the community as a whole, women often report being underrepresented in research endeavors. Despite this, a large number of women indicated they would be interested in engaging in research, if given the opportunity.
Patient-centered outcomes research (PCOR) is truly centered around the patient and in this case the women of our community. The research approach allows women to be engaged throughout the entire process of research from development of the study itself to the reporting information back to the community.
We are updating our聽Community Research Portal. Stay tuned to learn more about this exciting update!