The Role of Patient Organizations in Increasing Representation at the Clinical Trial Site Level

Tracy Battaglia, MD, MPH is a primary care clinician-investigator internationally recognized for her collaborative, innovative approaches to addressing health disparities among women historically marginalized. She has led the development of foundational infrastructure to support community-engaged methods in translational science. Her own research focuses on engaging with community to increase access to care for at-risk women, including ground-breaking work on the role of oncology patient navigators. Through her participation on several National Cancer Institute cooperative groups, she contributed to the 2012 Commission on Cancer Accreditation Standard requiring navigation services in cancer centers. As founding chair of the National Navigation Roundtable, she partners across sectors for sustainable navigation workforce.

Horace Clark has a diverse work experience in the field of sales and business development. Horace's most recent role was as the VP of Account Management at BlackDoctor.org, where they connected pharma companies and brands to a highly engaged audience through digital advertising. Prior to that, they served as the Business Development Manager at BNtheMix, where they launched a news and information site dedicated to cause-related content. Clark also worked as an Enterprise Solution Sales professional at RR Donnelley, selling a range of products and solutions to companies in various industries. Earlier in their career, Clark held positions such as National Sales Executive at Yelp, Director of National Accounts at Wanderful Media, and National Digital Sales Manager at The EW Scripps Company. Clark also worked as the National Director of Digital Sales at ImpreMedia, where they developed the national digital sales strategy and managed multiple sales teams. Clark began their career as an Account Executive at Undertone Networks and later joined The New York Times as an Account Manager. Clark has a strong background in sales, strategic partnerships, and digital solutions, and has consistently shown their ability to achieve revenue goals and establish successful client relationships. Horace Clark received their Bachelor's degree in Business Administration and Management, General from Florida Agricultural and Mechanical University. Horace attended the university from 1990 to 1995.

Elizabeth George is Head of Patient Diversity at Labcorp and leads a team focused on advancing health equity leveraging Labcorp’s expertise with diagnostics, clinical trial recruitment and data. Ms George is passionate about enabling equitable outcomes for underserved populations by increasing access to clinical trials, therapeutics, diagnostics, and screening. She has led strategies and solutions to ensure science guides the selection of clinical trial participants at Labcorp and GSK. Ms George is a strategic leader with proven experience leading large cross functional digital transformational initiatives to transform clinical trials. She has a deep knowledge of pharmaceutical R&D processes and her expertise spans leading and developing transformative business strategies and managing all phases of project lifecycle from conception through product launch. Ms George is a thought leader and has been invited to speak at numerous conferences.

Maimah Karmo is the Founder/CEO of the Tigerlily Foundation (Tigerlily)and a twelve-year survivor of breast cancer. On February 28, 2006, at 4:45 p.m., Maimah was diagnosed with Stage 2 breast cancer. She had no family history and was32-years old. While undergoing her second round of chemotherapy, she launched an organization to educate, empower, advocate for and support young women affected by breast cancer. Tigerlily provides breast health, educational, empowerment wellness and transformational programs to young women. After working with Congresswoman Debbie Wasserman Schultz to develop the Breast Cancer Education and Awareness RequiresLearning Young (EARLY) Act, in October 2011, Maimah was appointed to theFederal Advisory Committee on Breast Cancer in Young Women, a committee established by the Affordable Care Act, on which she works to develop initiatives to increase knowledge of breast health and breast cancer, for women under the age of 45 and those at heightened risk for developing the disease. She is a speaker and media personality, regularly called upon to speak on Capitol Hill and other venues,as a health, advocacy and empowerment expert. In 2015, Maimah advocated withMembers of Congress to ensure that young women had access to breast screening. Tigerlily Foundation flew young women to Washington, D.C. to meet with 74 members of Congress. The visit resulted in doubling theHouse and Senate support for the Protecting Access to Lifesaving Screening(PALS) legislation. The bill was signed into law within a month, protecting the lives and rights of millions of women. Maimah has worked with the Centers for Disease Control (CDC) to launch national campaigns and has served as an Ambassador for National Women’s HealthWeek, an initiative of the Office of Women’s Health. Tigerlily Foundation has launched national and global health initiatives focused on ending disparities, through the #InclusionPledge, partnering with global stakeholders, with a call to action to recognize health disparities as a social justice issue; and working to end disparities for black women in our lifetime.Maimah has appeared in several nations publications. She has also been featured on Fox 5, ABC 7, CBS, the Oprah Winfrey Show, OWN, Good Morning America, theToday Show. Most dear to Maimah’s heart is her 17-year old daughter,Noelle. Maimah earned her BA in Communications from George Mason University and an MBA from the University of Maryland UniversityCollege. In 2010, Maimah published Fearless:Awakening to my Life’s Purpose Through Breast Cancer. Visit www.tigerlilyfoundation to learn more.

Jeanne Regnante, at the helm of Patient3i, LLC, ( Patient Insights Inspire Innovation) is dedicated to advancing healthcare strategies that drive meaningful initiatives in patient engagement, community outreach, and inclusive research practices. Her work spans critical therapeutic areas such as cancer, cardiovascular disease, and rare diseases, with a steadfast focus on health equity. Jeanne is proud of her 30+ year career at Merck & Co, Inc. where she was head of global patient engagement and Chief of Staff to the company’s Chief Medical Officer. Patient3i’s team partners with community-based organizations and stakeholders to create programs that resonate with underserved communities , empowering them to take charge of their healthcare journeys. By integrating patient experiences and perspectives into measurable outcomes, Patient3i strives to achieve health equity where people live and receive care. Jeanne has worked with esteemed organizations such as the Tigerlily Foundation, LUNGevity Foundation, and the National Minority Quality Forum, Premier Allied Sciences and several start-up and industry leaders. Her primary focus has always been engaging medically underserved and vulnerable communities, ensuring their voices are heard and their needs addressed through authentic trusted partnerships with community organizations, health systems, cancer centers, and professional groups. “ It’s not health equity unless the patient says so” Leveraging extensive industry expertise in corporate health and strategy, Jeanne ensures that all communities are represented in healthcare decision-making processes. This approach is informed by patient organizations, community-based groups, and professional associations, and it extends beyond advocacy to encompass strategic partnerships and the promotion of health literacy where she contributes on the Board of Directors at Health Literacy Media, St. Louis Mo. Driven by the belief that patient-focused approaches are essential for creating sustainable healthcare systems and advancing equity, Jeanne actively contributes to peer-reviewed publications, blogs, and public events. These efforts highlight the importance of communicating what works based on representation and patient involvement throughout research and the care continuum. To realize lasting impact, Jeanne advocates for collaboration, mentoring, lifting community-based organizations up and shared learning across public and private sectors, underscoring the power of united action in achieving equitable healthcare for all.