HFA’s FIRST Program, Promoting Women in Patient-centered Research, Wins PCORI Grant

To encourage more women to take part in disease research, the Patient-Centered Outcomes Research Institute (PCORI) has chosen the Hemophilia Federation of America (HFA) and its FIRST project to receive a Eugene Washington PCORI Engagement Award.

The HFA’s FIRST project stands for Females in Research Sharing and Translation, and aims at creating more opportunities for female involvement in patient-centered investigations. The capacity-building grant’s amount was undisclosed. Projects may be funded at up to $250,000 total for a maximum of two years.

According to a press release, the project starts by identifying where women are presently involved in studies, and pinpointing impediments, if any, to female participation. That will be followed by efforts to raise degrees of influence, engagement and research dissemination among female participants. If successful, the project could ultimately affect the clinical care of women with bleeding disorders.

While women are eager to participate in patient-centered research and investigations that affect clinical care, they lack involvement opportunities, particularly in research design that tends to skew toward males, the HFA said.

The FIRST project will include focus groups of women in the bleeding disorders community and the HFA’s 50-member network. Women with bleeding disorders who are interested in participating may write to [email protected].

The nonprofit HFA assists, educates and advocates for the bleeding disorders community. It aims to remove barriers to choice of treatment, and to improve the care and quality of life for all patients.

PCORI funds studies that can help patients and those who care for them make better-informed healthcare choices. Eugene Washington PCORI Engagement Awards 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) enterprise.

“At PCORI, our projects involve non-traditional stakeholders in selecting topics, designing and conducting research, and disseminating results,” PCORI’s Engagement Awards website states. “Building communities through engagement projects is central to our mission to fund useful CER that will help patients and those who care for them make better-informed healthcare choices.”

According to the National Hemophilia Foundation, some 20,000 U.S. residents have hemophilia. The global incidence is not well-known, but is estimated at more than 400,000.