Our Engagement Efforts
Our outreach efforts allows patients, caregivers and providers in be engaged in developing equitable healthcare practices.
- Community listening sessions and data gathering to enlighten HFA's goals and work
- Outreach and connection building with community members
- Education and policy work to minimize barrier to receiving equitable & quality care
- Opportunities to elevate the patient voice in research that directly affects the wellbeing of community members
One of the many ways HFA engages with community members is through listening sessions with specific sub-populations that may have specific needs, interests, and/or barriers to equitable health.
These sessions are held at our annual Symposium, at other in-person community events, and in online video conferencing sessions.
Groups have been formed based on demographics such as diagnosis, gender, inhibitor status, caregivers, preferred language, age range, and LGBTQIA+ status to learn more about the patient experience and needs. Topics covered have included, but are not limited to, aging, treatment disparities, transitioning from pediatric to adult care, mental health, financial/insurance concerns, current perspectives on treatment options/how needs change with changing treatment landscape, access issues, and desired educational topics. The information gathered during these listening sessions are used to inform HFA programs and initiatives.
If you are interested in participating in an HFA listening session or would like to suggest an un- or under-served group within the bleeding disorders community, email HFA’s Engagement & Community Health Team.
The Bleeding Disorder Health Disparities Council (BDHDC) is a monthly working group that reviews the findings from past HFA needs assessments and research to produce educational materials, presentations, and engagement for a wide variety of stakeholders.
The founding goals of the BDHDC are to:
Increase awareness of health inequities and disparities among marginalized groups within the bleeding disorders community.
Offer patient-focused solutions to combat health disparities among racial and ethnic groups within the bleeding disorders community.
- Increase the engagement of communities of color within Hemophilia Treatment Centers.
- Increase the engagement of communities of color within local Member Organization.
If you are interested in participating in a BDHDC session or would like to suggest a topic to be discussed by the council, email Adrian Palau-Tejeda, Senior Manager for Health Disparities & Engagement.
Since 2019, HFA has been working to build capacity among females in the bleeding disorder (BD) community to participate in research and to encourage researchers to conduct research that includes and focuses on the needs of females with BD.
Much of this work was completed through HFA’s Females In Research Sharing and Translation (FIRST) project, which ran from 2019-2021 (PCORI Engagement Award #14528-HFA). The main goals of this project were to gain a better understanding of current levels of research participation among females, identify gaps in participation in research for females in the BD community, and provide education for females with BD diagnoses or symptoms around BD and patient-centered outcomes research and comparative effectiveness research (PCOR/CER). This project culminated in the creation of a Research Agenda for Females with BD by HFA’s Community-Based Research Network (CBRN), which was comprised of patients, researchers, and other stakeholders in the female BD community.
Concurrently with the FIRST project, HFA ran the Women In Research Engaged while Distanced (WIRED) project from 2020-2021 (PCORI Engagement Award #EAIN-00202) in response to stay-at-home orders due to the COVID-19 pandemic. This project comprised of a 4 week educational program for females with BD symptoms or diagnoses in a fully online, interactive, peer-led format. Topics covered included bleeding disorder basics, women’s health, and research and clinical trials. Patient representatives of the CBRN were selected from graduates of the WIRED program and played an essential role in building out the Research Agenda for Females with BD.
Following the completion of this work, HFA felt a need for more stakeholder support of and buy-in for the Research Agenda for Females with BD. In response to this, the Driving Stakeholder Support and Adoption of a Research Agenda to Improve Outcomes for Women with BD project was developed (PCORI Engagement Award #EASCS-23237). The goals of this project were to gather further feedback and refinements on the Research Agenda for Females with BD from additional stakeholders and community members, and to convene a broad group of community stakeholders to present the Research Agenda for Females with BD for consensus and adoption. This convening took place on October 28, 2022 in a hybrid in-person/online format with 32 stakeholders in attendance. The Research Agenda for Females with BD was unanimously accepted and organizational representatives in attendance expressed their interest in and commitment to furthering the work of research for females in this community in a collaborative effort.
HFA’s Improving Minority Participation and Advocacy in Clinical Treatment (IMPACT) workshop provides a virtual training space for HTC and HFA’s Member Organization staff to learn about and collaborate on equity in clinical treatment practices and the barriers to care that exist to diversity in clinical trials.
Our inaugural workshop will be held in January 2024. The first two days of the event will be focused on education and instruction from subject matter experts, with the final day of the workshop allowing for confidential and challenging roundtable discussions as well as opportunities for large group share outs and Q & A.
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