Background: Women are one of several underserved groups when it comes to engagement in research. Females participating in Hemophilia Federation of America (HFA) programs report being invested/motivated to participate in patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) but lacking opportunities to engage, especially in research design. Females with bleeding disorders have specific health concerns including: understanding risk to carriers of genetically inherited disorders, complications of menses, pregnancy, and menopause.
Proposed Solution to the Problem: HFA intends to help facilitate and engage females to become integral participants in the research process, using PCOR design, implementation, and dissemination by utilizing and expanding upon existing educational tools and community networks.
Objectives: The FIRST (Females In Research Sharing and Translation) overall project aim is to engage females within the bleeding disorders community in PCOR/CER. The objectives of FIRST are to gain a better understanding of current levels of research participation and identify gaps in PCOR research participation for women in the bleeding disorders community. The long-term objective of this project is to increase female influence and engagement in research development, implementation, and dissemination of results, which ultimately affects clinical care for females with bleeding disorders.
Activities: Through focus group discussions with women within the bleeding disorders community, the project team will identify motives for action, message strategies, and target audiences as well as the process by which providers and other stakeholders perceive and engage females in PCOR/CER. Informed by the team’s qualitative data, the researchers will establish a community-based research network (CBRN) of women within the bleeding disorders community in collaboration with other key stakeholders.
Outcomes and Outputs (projected): Identify barriers and facilitators for females within the bleeding disorders community to participate in PCOR/CER. Secondly, the formation and training of CBRN patient and stakeholder participants and development of a research agenda.
Patient and Stakeholder Engagement Plan: HFA’s network of 49 member organizations, collaborative partners, and organizational coalitions will be used to recruit female participants and other key stakeholders as well as to promote this project. Through previous projects, HFA has established and made progress in the advancement of initiatives for women in the bleeding disorders community. HFA will contact females who have attended and received PRIDE project training and draw upon the 500+ members of HFA’s Blood Sisterhood program to help recruit females in the bleeding disorders community for FIRST. HFA will identify and engage willing participants in the initial steps of FIRST to ensure that the patient voice is heard in every stage of the project.
Project Collaborators: HFA Member Organizations
Project Resource: Discussion Group Moderator Guide
Project Resource: Summary of Patient Focus Groups