Abstract SS03-03: The promise and the challenge of personalized medicine: A patient advocate perspective

Abstract

Abstract This Special Session, “Personalized Medicine: Promise and Pitfalls,” is a direct outcome of a process that began in late 2012 as the first initiative of The Pathways Project, a radically inclusive organization that creates communities and catalyzes movements that put people at the center of health care research and delivery. The Pathways directors wrote and posted “Personalized Medicine and Cancer Health Disparities—A Discussion Paper” (http://pathways-project.org/wp-content/uploads/2012/11/Patient-Voices-11-15.pdf) on the Patient Voices section of the Pathways webpage as a prelude to convening online Think Tank sessions to enhance awareness of and stimulate dialogue and action on these critical issues. The discussion paper—drafted as a starting point for more thorough investigation and reflection—and this presentation seek to focus the dialogue, pose necessary questions, obtain more than cursory acknowledgment, and engage diverse segments of the population (with patients at center) in considering and acting on the contradictions and challenges embedded within the promise of personalized medicine, especially for medically underserved populations. Extracting from the discussion paper, Think Tank deliberations, and experience in numerous patient communities, this segment of the session • Focuses on a patient advocate perspective and concerns • Highlights critical linking issues • Covers the great promise of and the daunting challenges related to actualizing the concept of “the right treatment to the right patient at the right time” • Proffers the idea that given the discordance of research and access—that is, the fact that as significant public research dollars are used to fund research on personalized medicine, large portions of the population cannot even access standard care—the emphasis on personalized medicine might be viewed as public funding of private access and might widen the gap in health equity and outcomes To consider the implications of personalized medicine across populations and levels of access to care and to lay the groundwork for meaningful, candid dialogue, broad definitions are offered for terms such as cancer health disparities, personalized health care, and standard of care. And then, a series of questions are posed to focus the discussion on substantive review of the implications and realities of personalized medicine across populations and disciplines, with the hope that the challenges will not overtake the promise and exacerbate the already unacceptable state of cancer (and other) health disparities. Questions include the following: • Will personalized medicine reach populations historically and currently poorly served by standard treatment regimens? If so, what is currently in place to enhance the likelihood? • As we work to do away with race as a biological proxy for disease risk, management, and treatment, how do we act to eliminate social inequities, which prevent the delivery of the great promise—the right treatment to the right patient at the right time? • What must we do to move beyond race as a first filter? • How do we move from health access and care controlled by social determinants to personalized medicine for all? • If we do not eliminate barriers to gateway processes or mechanisms (such as clinical trial participation and specimen banking), at what cost do we proceed in funding and in otherwise focusing resources on research that will yield health care and outcomes available only to some? • Can funding of personalized medicine research enhance the likelihood of good, or improved, outcomes for some—making such research/funding a private matter—at the expense of those already disadvantaged—making it a public health issue? • Is it likely that as research makes personalized treatment advances possible, the gap between those with access to advances and those without will be widened? Given these concerns and the possibility of unintended “harm,” that is, exacerbation of the current imbalance in access, care, and outcomes, these questions must be asked and vigorously debated. And, the frank, unfiltered responses should form the bases of action, without which a widening gap is a likely unintended outcome. Personalized medicine and cancer health disparities, often studied and covered separately, are fundamentally linked, and without focused attention, considerable patient input and engagement, and enhanced public awareness and understanding of the issues and intersections, the realization of personalized medicine and health care may present one of the critical public health and social justice issues of our time. The ultimate question is, how do we proceed with rapid research and implementation of personalized medicine and equally rapid elimination of cancer health disparities? This important discussion—focused and framed on specific critical issues and questions—must move from casual conversation and head-shake acknowledgments to clear and direct action steps and interventions. Citation Format: Mary Jackson Scroggins. The promise and the challenge of personalized medicine: A patient advocate perspective. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr SS03-03. doi:10.1158/1538-7755.DISP13-SS03-03