Background: In a continuous effort to support females in the bleeding disorders community, Hemophilia Federation of America (HFA) would like to convene a wide group of bleeding disorders community stakeholders to learn about the focus of the needs for women in the community outlined in HFA’s Research Agenda for Women, which was created as part of the project team’s Patient-Centered Outcomes Research Institute (PCORI)-funded Females in Research Sharing and Translation (FIRST) project.
Proposed Solution to the Problem: HFA proposes the formation of a steering committee to further outline and refine a patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) agenda that was created by the Community Based Research Network (CBRN), which was formed as part of the FIRST project.
Objectives: The project will consist of three aims.
Aim 1: Creation of a Steering Committee (SC) to support agenda refinement and outline the convening.
Aim 2: Gathering stakeholder feedback on the research agenda through the Steering Committee members.
Aim 3: Convening female patients and community stakeholders to review feedback, reach consensus on modifications, and finalize a research agenda that will be shared and adopted by the research community.
Activities: Following the work of the steering committee, HFA plans to host a convening event to bring together community stakeholders to review feedback received and host consensus development sessions on agenda topics requiring further discussions. The SC will finalize the research agenda for further dissemination and acceptance in the bleeding disorders community.
Projected Outcomes and Outputs:
The short-term outcome of the project includes a community supported/vetted research agenda focused on women with bleeding disorders that can be adopted by researchers across the US who work with women with bleeding disorders.
The expected mid-term outcome of the project (post-project period) is that the research agenda will serve as a blueprint that will allow researchers to identify projects that are meaningful to patients and generate ideas for research projects. It will also allow researchers to network with each other to develop cross-institutional collaborations to apply for research grants and develop multi-site projects across the country.
The long-term impact from the project (post-project period) will improve the science of women with bleeding disorders; increase the available literature on women with bleeding disorders; and generate the evidence needed to improve clinical practice, treatments, and treatment guidelines that improve the quality of life for women with bleeding disorders.
Patient and Stakeholder Engagement Plan: Patients and stakeholders will be engaged in every step of the project and HFA will support the infrastructure, planning, event hosting, and dissemination. Additional stakeholders will be those in the community—female patients, providers, researchers, community organizations, industry representatives, payors, and other financial stakeholders—interested in further defining and supporting projects that move forward the science of bleeding disorders in women to improve treatment and quality of life.
Project Collaborators: The CBRN consisted of female patients and other bleeding disorder community stakeholders. The SC members will gather feedback from stakeholders/organizations to support and refine the work that has been completed on the research agenda thus far.