Community engagement to diversify clinical trials
Community engagement to diversify clinical trials
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Takeda does not have any product approved for the treatment of psoriasis at the time of this publication and there's no assurance of approval for such products in the future.
Sicily Mburu, M.D, Scientific Officer at IFPA (formerly the International Federation of Psoriatic Disease Associations) received a bold request from the organization’s members and global advocates. As the leader of the All the Colors We Are project, she was asked to reach out to IFPA members around the world, requesting that they share photos of themselves living with psoriasis. IFPA would build a collection of images to help demonstrate how psoriasis presents on diverse skin tones. After her outreach, she expected only a few photos to trickle in over a couple of weeks. Within the first week, she received more than 500 images.
Why did so many brave people – young and old – offer to bare their skin and their psoriasis? Dr. Mburu says IFPA members want to make things better for themselves, others, and future generations.
“These photos can help clinicians see skin disease on skin of color, which can make health care diagnosis and treatment more equitable,” she says. “That’s foundational to building health in this generation and the next.”
Building generational health entails generating lasting and sustainable change. Leaving no one behind in that effort is essential.
Sicily Mburu, M.D., Scientific Officer, IFPA* (formerly the International Federation of Psoriatic Disease Associations)
"As IFPA, we are breaking the silence surrounding clinical trials and advocating for diversity and inclusivity when research is discussed. People living with psoriatic disease are now boldly sharing their stories in rooms where they were once told to hush.”
Sicily Mburu, M.D., Scientific Officer, IFPA* (formerly the International Federation of Psoriatic Disease Associations)
Takeda is working with IFPA and other organizations toward a goal of raising awareness and understanding so that more people of color feel informed about participation in clinical trials.
Inside Edge hosted a recent health education event with members of Alpha Phi Alpha fraternity in Los Angeles, California. Study investigator Dr. James Yen Wang led an active discussion about psoriasis clinical research and the importance of having diverse patient representation.
In the United States, Takeda has a formal partnership with HCN (formerly Hispanic Communications Network), which has a constant presence in Latino and multicultural communities via their multimedia, stakeholder and health worker networks. HCN’s CEO, Alison Rodden, says building sustainable relationships and trust over time is a critical component of connecting with local communities and spreading awareness of clinical trials.
Alison Rodden, CEO of HCN* (formerly Hispanic Communications Network)
"Even when people are aware of clinical trials, they have questions about what it means to be a subject, and problems with language translations have added to the confusion. To compound the burden, they may not have time off from work or access to transportation to attend visits. It's really important that we understand these factors and speak in culturally sensitive ways to build the connections and trust that are needed.”
Alison Rodden, CEO, HCN
Karen Correa, who is Vice President and Head of Global Clinical Operations at Takeda, says that diversifying patient participation in trials - and understanding of the needs of diverse communities - has mattered from the start of Takeda’s clinical trials for psoriasis, a condition that presents differently in patients of color.1
Karen Correa, Takeda Vice President and Head of Global Clinical Operations
Inside Edge Consulting also partners with Takeda on clinical trial strategy in the U.S. Lionel Phillips, president of Inside Edge, grew up in the Bronx, New York, where he saw firsthand what happens when people are underserved, especially when it comes to access to health care. This motivates him to build relationships with local communities to help companies like Takeda connect with diverse populations in culturally resonant ways.
Lionel Phillips, President of Inside Edge Consulting Group*
Demonstrating respect for communities is foundational to Takeda’s approach, Correra notes. “We want people of color to engage in our clinical trials because they feel seen and heard, and they know we are building a knowledge base that will serve their communities and future generations of patients.”
Ultimately, Dr. Mburu says diversifying clinical trials depends on us understanding the needs of diverse patient populations globally and in local communities. Diverse patient clinical trial participation requires efforts that unite global and local organizations as well as physicians, investigators and people with psoriasis to create awareness and break down barriers.
"Health around the globe and from one generation to the next depends upon us all doing so.”
*These organizations have received or are receiving funding from Takeda.
- Prevalence, Clinical Presentations, Disease Severity Appreciation, and Assessment of Psoriasis in the Context of Skin of Color. International Psoriasis Council. Accessed June 11, 2024. https://psoriasiscouncil.org/expert-insights/skin-of-color-psoriasis-disease-severity-assessment/
