Inaugural Workshops Prioritize Needs of Health Equity for Community Members

This spring, Hemophilia Federation of America hosted its first set of workshops for IMPACT, a new initiative to address barriers that exist to diversity in clinical trials and clinical treatment practices. HFA’s Director of Policy, Health Equity and Community Engagement, Adrian Palau-Tejeda, shares what the inaugural workshops covered. 

IMPACT—Improving Minority Participation and Advocacy in Clinical Treatment—was a virtual workshop and forum hosted by HFA to bring together Hemophilia Treatment Center (HTC) staff and the staff at HFA’s member organizations to work on and discuss diversity in clinical trials and treatment. 

With the idea that the healthcare system as a whole affects community members’ health outcomes, HFA wanted to create a space that would address topics holistically. Through the IMPACT Workshop, HFA planned to address the different vectors or healthcare settings where community members may face disparities: emergency rooms, hemophilia treatment centers and primary care centers.

The workshop stretched over three days with different subject matter experts and community voices. The first day served as an introductory session that clearly defined the relationship between clinical care and clinical trial diversity from the perspective of physicians and HTC staff. The second day featured HFA member organization executives and a patient who received gene therapy,
in a Socratic-panel structure, around specific health equity-focused programs in the bleeding disorder
space. The conclusion of the workshop provided
an opportunity for HTC staff, member organizations
and other community stakeholders to apply lessons learned in round table discussions and road mapping working groups.  

What HFA Discovered

Based on the discussions from the third day, HFA was able to compile priorities. The priorities established by the first group, facilitated by Janet Chupka, HFA’s Director of Engagement & Community Health Outcomes, can be broken down into member organization-focused programming, health access and HTC and Member Organization cooperation. 

Member Organization and Hemophilia Treatment Center Programming: Attendees would like to see member organizations and HTCs:

• Collaborate with other member organizations who are hosting content focused on underserved communities, such as the Southern California chapter and their Spanish-speaking conference, to send community members to said events when it is not feasible to similar host events by the member organization. 
• Improve interpretation services so members of the community who do not have English as their primary language are able to participate and receive education in their own language.
• Improve minority participation in conferences and events hosted by HTCs and community member organizations.   

Community Member Support and Assistance: Attendees would like to see member organizations and HTCs:

• Continue to provide bleeding disorder community members with travel assistance to and from appointments to reduce the financial load attached to receiving treatment or attending check-ups. 
• Present more opportunities for community members who may have English as their second language to understand their diagnosis with a translator or translated resources. 
• Be transparent with families about clinical trials and what to expect during and after the trial process. 

Underserved Community Support: Attendees would like to see member organizations and HTCs:

• Have community member organizations and hemophilia treatment centers collaborate with additional member organizations to offer a broader range of programming.

• Help one another reach communities that we are not currently serving, especially lower income communities or people of color through diverse programming like health fairs.
• Understand that it may be necessary for future programming  to take a step back from the way that programming is currently being done to examine areas where there may be unaffiliated patients and those who are not currently being served.

The key takeaways from the second group, facilitated by Palau-Tejeda, centered on engaging with community members who may not be affiliated with HTCs and member organizations, taking into account the different barriers and health disparities that communities may face. Additionally, there was a specific focus on supporting existing programming that supports underserved communities such as women-focused research programs, support groups, and language services. 

Member Organization and Hemophilia Treatment Center Programming

• Framing Bleeding Disorders Health Equity to include all facets of diversity and health disparities present in the bleeding disorder community, such as lack of service in rural communities or those who face unique barriers due to their social-economic status. 
• Create and work on programming focused on connecting with unaffiliated and unconnected community members who may fall under the radar. 
• Offer more translation services for communities that may have English as a second language or lack proficiency in order that help with health literacy and fairness.  

Stakeholders and Coverage

• There should be a priority in not alienating private hematologists when advocating for Hemophilia treatment centers or when gathering stakeholders, with the reassurance that community members and HTCs are not taking their patients away but rather building connections and capacity. 
• When advocating on behalf of community members for coverage and access issues, make sure to acknowledge the need for patients to see both a hematologist and an HTC. 
• Additionally, addressing denial of service due to community members on public health insurance, in order to ensure that individuals are not turned away from nearby clinics due to unwillingness to bear “cost.”

Support for Women with Bleeding Disorders 

• Fairness in information for women with bleeding disorders, especially in promoting the inclusion of women in clinical trials. 
• Establishment of women’s clinics within HTCs that work specifically for women and include additional female-focused providers like OB/GYN’s, for the coordination of care and to especially address the national disparity in treatment between men and women with bleeding disorders.
• For member organizations to continue to create and lead support groups for underserved groups like women with bleeding disorders. 

In conclusion, support was high for greater stakeholder cooperation between HTCs and community member organizations. Still, there remained a desire to make sure that the community and HTCs did not exclude community members who were unaffiliated currently with HTCs or who may visit private hematologists. For health equity programming to succeed, attendees agreed that programming must be diverse, cooperation strong, and that we must meet people where they are.  

Special thanks to our sponsors Spark Therapeutics and Sanofi.