Donate

By Whitney Armijo, Research聽Project聽Coordinator

In the past two years, two Hemophilia Federation of America (HFA) projects have aimed to empower women in the bleeding disorders community to take part in research and advocate for their own health.

In 2019, the HFA research team created Females In Research Sharing and Translation (FIRST) to gather more details about how women in the bleeding disorders community feel about research, what prevents them from participating in research, and what researchers can do to encourage more women to participate in research. FIRST was funded by the Patient-Centered Outcomes Research Institute (PCORI).

FIRST included four in-person focus groups of women with bleeding disorders or symptoms of bleeding disorders. A fifth focus group was done over Zoom and included women from across the country. One of the themes observed in these conversations was that women do not participate in bleeding disorders research because they simply are not aware of any research opportunities that include women.

After the focus groups were conducted in late 2019 and early 2020, the next step in the FIRST project was to hold an in-person training to provide information about bleeding disorders and about patient-centered outcomes research to women. The aim was to empower women to engage in research in the future.

However, because the COVID-19 pandemic prevented any large gatherings in 2020, HFA applied for and received funding from PCORI to promote virtual engagement. This funding was used to create a virtual, web-based academy where women could safely engage with each other and receive education on bleeding disorder topics.

The academy鈥攃alled Women In Research Engaged while Distanced (WIRED)鈥攚as an educational platform created by HFA and tailored for women with bleeding disorders. It ran from October 26 to November 24, 2020.

WIRED Academy

In designing WIRED, the research team used what we learned from the FIRST focus groups to encourage as many women as possible to attend. To facilitate that, the program was designed to be mostly self-paced, allowing women to engage whenever their busy schedules allowed. In addition, live meetings were scheduled on weekday evenings, monetary compensation was offered, and women with all forms of bleeding disorders were included, all as requested by women during the FIRST focus groups.

Eighty-eight women were enrolled in the program and divided into eight groups of 11 women each. One woman from each group was selected to serve as a peer mentor. After researching different engagement platforms, we chose Crowdstack as the home for WIRED Academy. This was mainly due to its focus on user conversations, its ability to show leaderboards (including a points system to award members for their activity within the site), and its participant privacy security features.

A curriculum was designed to best help women have the knowledge base to confidently participate in future research. Four learning modules were created:

  1. Bleeding Disorder Basics
  2. Women鈥檚 Health
  3. Research and Clinical Trials
  4. Engaging while Socially Distancing

The educational material for the first three modules was based in HFA鈥檚 Learning Central platform (the content can still be accessed at www.hfalearning.org), while the fourth module鈥檚 curriculum included articles published by PCORI about the importance of continuing research while social distancing measures are in place.

WIRED Academy was also designed to inspire engagement among the women via discussion board prompts posted twice a week by peer mentors and via live Zoom webinars. Group members were encouraged to share thoughts and impressions from the week鈥檚 curriculum with each other. In addition, a group of all the women participating in the WIRED Academy was created to foster relationships and discussion across all focus groups.

Women were also provided opportunities to talk with bleeding disorders experts. A Furthering Education Seminar was held for each module in which an expert presented on the topic covered and then answered participants鈥 questions.

Most participants felt that the WIRED Academy was a good resource for better understanding their bleeding disorders from a woman鈥檚 perspective and for giving them tools for advocating for their own health. As one of the participants said: 鈥淚 learned so much from the women involved with WIRED. I found out what it is like for those who had bleeding disorders that are not usually talked about. I appreciate all the personal stories. I have seen so many of you reach out and support each other. 鈥 Let鈥檚 keep the ball rolling!鈥

Many women also reported an increased desire to participate in research and greater confidence that their voices are essential in the research process.

Future Implications

Through participation in this program, we now have a better-informed cohort of women in the bleeding disorders community who are able to not only better advocate for their own health but also participate in patient-centered research design and implementation.

Their increased knowledge of research and of the importance of patient input during the research process results in informed community members. These women can now help researchers examine what matters most to people in the community, understand the importance of participating in research and advocate for other women in the bleeding disorders community. Participating in this program also allowed women the opportunity to create bonds with other women in the community and support each other as they continue to face their daily challenges.

After the completion of the WIRED Academy, we recruited four graduates to participate in our FIRST project鈥檚 Community-Based Research Network (CBRN). We worked with this network from January through May of 2021 to identify topics across the lifespan of women with bleeding disorders that need to be researched further. It has helped us create a research agenda that will be distributed to funders, researchers and other stakeholders across the U.S. to encourage more research on women.

The four women from WIRED Academy were integral to this process. They shed light on what kinds of research matter most to women in the bleeding disorders community.

HFA is now seeking further resources to continue to engage with the members of the CBRN, further refine the research agenda and broadly disseminate it in the coming year.聽Stay tuned!


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.