Purse Ho
By Ed Miseta, Editor-in-Chief, Clinical Manager
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The recruitment, retention and diversity of patients in clinical trials is an ongoing challenge. While there is an industry-wide effort underway to try and fix these issues, they won’t really be affected until researchers are able to create a better patient experience, better reach patients from diverse communities, build genuine relationships and work to co-create solutions as equal partners.
One company that makes a difference in this regard is Seagen Inc., a global biotechnology company that develops and markets transformative cancer drugs. They attribute their success to focusing on the patients and partnering with frontline organizations with diverse patient populations and at the clinical trial sites themselves. Seagen wanted to reach patients of diverse ethnic backgrounds and understand the barriers they face in clinical trials and find solutions for patients and site partners.
To do this, Seagen has engaged with the Tigerlily Foundation, whose mission is focused on education, awareness and advocacy for breast cancer patients, especially women of color. The organization’s vision is to end disparities in age, stage and color. Tigerlily has strategically focused on women of color, as black women tend to have more aggressive cancers and a 40% higher death rate than their white counterparts. Maimah Karmo, Founder and CEO of Tigerlily Foundation, a black women-led patient organization at the forefront of change and patient-centered engagement in diversity in clinical trials, is herself an black patient who has experienced many of the disparities she has worked to eradicate. She found that there was a lack of true collaboration between industry and patients and worked as an integral part of Seagen to educate at all levels of the organization, overcome obstacles and co-create solutions. . In addition, she is able to be representative of the points of view of the patients she supports.
“We all know there is a lack of education about trials in some communities,†Karmo says. “There is also a distrust of pharmaceutical companies that must be overcome. And, often there is simply a lack of access to the trials – or we haven’t offered them. We take the pulse of what patients feel and experience through our Tiger Trials program. Our close and trusted relationships with communities of color allowed us to share the barriers to participation in the trials that we identified and to work with Seagen as they sought to ask what it could and should be done to. overcome every challenge. In collaboration with Seagen, we have also developed Barrier Toolkits that identify barriers, but more importantly, they provide resources and guide patients on how to advocate for themselves to overcome them. We will distribute these toolkits to patients, healthcare providers and hope to have kiosks in pharmacies and also integrated into healthcare systems. “
Seagen also worked with the Lazarex Foundation to learn about barriers faced by patients, particularly regarding reimbursement of expenses incurred by patients participating in clinical trials, including parking costs, travel costs and meals. to name a few.
Reimbursement can be essential for patients to be enrolled in a trial, especially if those patients have lower income. Excessive costs can also lead to patient retention issues. The cost of missed work, gasoline, parking, tolls and overnight stays may be too much for many families to absorb because it really adds up. Lazarex explained to Seagen the huge reimbursement problem for many patients so that they can find ways to better manage patient reimbursements and communicate correctly and clearly in a culturally sensitive way to patients and their families.
Speaking with site partners, Seagen then learned that managing patient reimbursements was often seen as an extra chore or burden by busy site staff. For example, partnering with Greenphire, Seagen evaluated other payment solutions by having them examine what needed to be accomplished, how sites communicated with, how they handled site and patient payments, and more. Together, they were able to dig deeper into the site’s activities and think of better ways to do it.
The solutions put in place involved automating processes, reducing paperwork and offering alternatives to patient checks, such as reloadable debit cards. Alternatives such as debit cards can make patient payments easier for site staff, but also help patients. Cashing a check can be difficult if a study participant does not have a checking account. Check-cashing locations will take a percentage of the check amount, thereby reducing the patient’s proceeds.
Beyond identifying small solutions that have a big impact, the most important element for continuous and lasting change in diversity and recruitment in clinical trials is open communication and trust within minority communities. It must stop being a transactional relationship and evolve into a long-term commitment – and not just for one try but for everyone.