On October 28, 2022, thirty-two bleeding disorders (BD) community stakeholders met to learn about BD in women, discuss gaps in care and research for women, and read, discuss, and adopt the research agenda for women with BD created through Hemophilia Federation of America’s Females in Research Sharing and Translation (FIRST) project.
Twenty-four stakeholders met in person in Leesburg, VA and eight stakeholders joined virtually over Zoom. The stakeholders in attendance consisted of patients, clinicians, researchers, pharmaceutical industry representatives, health care advocates, policy advocates, health equity advocates, leaders of other bleeding disorder groups, and a representative from PCORI.
The day commenced with an introduction to the work and team followed by a welcome “ice-breaker” and then educational sessions to provide insight as to why this work was started and make the case for the need for more research for women with BD.
The afternoon was devoted to sharing the work that Hemophilia Federation of America (HFA) has done regarding educating the community about PCORI and the need for more research for women, including the sharing and discussion of the research agenda created by the FIRST project.
There was much discussion, Q & A and conversation about the research agenda and its importance for the community. The only suggested edit to the agenda was to change the term “women” to “females” in an effort to be more inclusive and specific regarding the target population of the research agenda. A lengthy discussion also took place regarding how the stakeholders present and their respective organizations need to come together regularly to avoid duplicity of efforts and work collaboratively for the benefit of females with BD.
While the conversation was rich, open, and candid, some of the conversation sparked more questions than answers about how best to move forward and who had the capacity, bandwidth, and budget to do so. However, preliminary next steps were outlined with multiple organizations offering to collaborate, and various potential funding sources were discussed. The day ended with a communal dinner where conversations and connections continued.
The final consensus was to convene a group of interested parties to further discuss how to move research projects for women forward together as a stakeholder community, and what needs to be done and create a timeline for action for this to happen. HFA will continue to champion and drive the efforts to move the work forward. Some of the action items that the group identified to further the work included:
- Update and then broadly disseminate Research Agenda (HFA)
- Create an assessment/list of current research projects (FWG, HFA, others)
- Mapping of tools/activities/resources that can be used (NHF, HFA, others)
- Utilize data in existence (CDC/ATHN Community Counts, NHF, PROBE)