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HAPPENING HIGHLIGHTS

HFA Awarded PCORI Grant to Better
Connect Women During Pandemic

Hemophilia Federation of America has received a Eugene
Washington PCORI Engagement Award from the Patient-
Centered Outcomes Research Institute for its WIRED (Women
in Research Engaged While Distanced) Project, to improve
women’s engagement in patient-centered research while

social distancing.
When many states in the United States gave stay-at-
home orders because of the global pandemic caused by
COVID-19, it put a halt to the usual participation in and
dissemination of research. With travel restrictions in place and the risk traveling places on the patient
community, connecting patients, specifically women, became challenging. It caused research stakeholders
to rethink the usual forms of engagement and to create opportunities for teams to connect remotely.
To deliver training effectively, virtual and distance methods of engagement needed to be identified,
explored and evaluated to understand which methods result in higher continued community building, and
to be best prepared for future emergencies or situations that require social distancing.
To solve this problem, HFA identified promising approaches for sustaining engagement of women affected
by rare diseases in times of social distancing due to COVID-19, and developed WIRED Academy.
Women selected to participate in WIRED Academy received information about bleeding disorders, the
research process and the importance of advocating for more research on women with bleeding disorders
through modules available on HFA’s Learning Central e-learning platform and through live virtual seminars
with experts in these fields. Women also built relationships between their Blood Sisters as they discussed
course topics together and shared their experiences as women with bleeding disorders.
PCORI awards the Eugene Washington PCORI Engagement Awards to support projects that encourage
active integration of patients, caregivers, clinicians and other healthcare stakeholders as integral members
of the patient-centered outcomes research/clinical effectiveness research (PCOR/CER) initiative.
Learn more about WIRED at www.hemophiliafed.org/WIRED.

4 DATELINE FEDERATION < www.hemophiliafed.org