Strategies to Diversity Patients Participation in Clinical Trials

Ms. Kim Fookes, Global Head of Diversity & Inclusion in Clinical Trials, Global Development at Novartis

Ms. Kim Fookes of Novartis explained how the data behind the health disparities and how vast they are between White patients and minorities drives her to make a difference. Ms. Fookes also spoke about how she strives to change the hearts and minds of people she works with. Some may not understand the disparities or believe they don’t exist. However, once these hearts and minds are changed, they become part of the army of people who can help make changes and decrease racial disparities behind cancer.

At Novartis, Ms. Fookes manages a community outreach program and collaborates with other institutions to increase diversity in clinical research. Her organization seeks to increase capacity across Black medical schools. Lastly, she emphasized the advancements in clinical trials and how they provide some of the best treatment options for cancer patients.

Strategies to Diversity Patients Participation in Clinical Trials: Ms. Amy Worth, MacroGenics

Ms. Amy Worth, Associate Director in Clinical Operations at MacroGenics

Ms. Amy Worth of MacroGenics explained how she grew up with a passion for serving the healthcare needs of local communities due to her mother working as an oncology nurse for 45 years. She remembers her mother partnering with local establishments to help patients and their families find lodging as well as organizing a big celebration picnic for another patient. Ms. Worth explained that seeing the disparity data is a call to action to reduce healthcare disparities.

The initiatives at MacroGenics start with collaborating among patient organizations like PHEN. Her work revolves around improving clinical trial engagement cross-culturally and increasing diversity in their current patient population. She also mentioned a MacroGenics video in which prostate cancer patients provide advice to investigators for increasing clinical trial participation among minorities. She strives to break the barriers in patient education by defining complex terms and empowering patients to ask questions and make healthcare decisions.

Strategies to Diversity Patients Participation in Clinical Trials: Ms. Sandra Amaro, Pfizer

Ms. Sandra Amaro, MBA, Head of Clinical Trial Diversity at Pfizer

Ms. Sandra Amaro of Pfizer is motivated to work toward increasing clinical trial diversity because these initiatives are critically important for communities of color. She is driven to continue conversations about ways to shift the culture and improve inclusion in clinical trials. Ms. Amaro also has a personal reason to work in this area, as her Dominican father-in-law was diagnosed with prostate cancer. She emphasizes the need to collaborate with multiple establishments, lock arms, and come together to achieve equity in clinical research.

She also explained how all the diversity specialists participating in the Summit’s third session know each other and continually look for ways to work together. To boost equity in clinical research, Pfizer also has a fellowship program and works with HBCUs (historically black colleges and universities), medical schools, and nursing schools. Ms. Amaro concluded that clinical trials are meant for everyone and offer real hope to patients.

Strategies to Diversity Patients Participation in Clinical Trials: Ms. Natalie Macario, PCCTC

Ms. Natalie Macario, Project Associate for the Prostate Cancer Clinical Trials Consortium

Ms. Natalie Macario manages the Promise registry study, which provides genetic tests and gathers genetic information from prostate cancer patients. She strives to show people the value of genetic testing, especially in communities of color. For example, she helps patients find out if their future offspring will have the same genetic mutations and diseases, they’ve faced themselves.

Since Ms. Macario comes from a Dominican background, she has seen how her community desires healthcare access and how her culture ties into various medical needs. She seeks to improve the lives of minorities. Lastly, Ms. Macario emphasized the importance of patient education, gathering more information, and getting tested to receive the best treatment before a disease progresses.

Strategies to Diversity Patients Participation in Clinical Trials: Ms. Cameron Davis, Merck

Ms. Cameron Davis, Associate Director of Clinical Trial Diversity at Merck

Ms. Cameron Davis explained during the PHEN Summit session that she works as the diversity program lead at Merck across the oncology space, mentioning how her drive is due to both personal and professional reasons, as her family has been impacted by cancer. She seeks to improve health equity and increase awareness of medical advancements, outlining how both are important for generational health.

Ms. Davis works to incorporate the patient’s voice and collaborate with healthcare providers to support patients and provide resources, such as diversity toolkits offered to investigators and patients. She attempts to understand the challenges faced by patient populations and advance initiatives to bring minorities into clinical trials. Further, Ms. Davis emphasized the need to expand relationships between the community and local healthcare providers. Collaborating with industry and advancing clinical trial infrastructure is also essential.

Strategies to Diversity Patients Participation in Clinical Trials: Ms. Lisa Lewis, Janssen

Ms. Lisa Lewis, Director of Diversity, Equity & Inclusion in Clinical Trials – Oncology at Janssen

Ms. Lisa Lewis, the Director of Diversity, Equity & Inclusion in Clinical Trials at Janssen, finds her drive from her team, responsibilities, and collaborations with organizations like PHEN. She has personal reasons for serving in the healthcare industry, as her mother was a nurse at a large medical center and, unfortunately, passed away from breast cancer.

She also comes from a community of color in which both her African American father and husband are prostate cancer survivors. That has driven her to partner with PHEN. Ms. Lewis described how clinical trials are meant for everyone, and the organizations gathered at the Summit are doing excellent work to promote clinical trial inclusion.