Structural Racism in the COVID-19 Pandemic: Moving Forward.

The COVID-19 pandemic has taken a substantial human, social and economic toll globally, but its impact on Black/African Americans, Latinx, and American Indian/Alaska Native communities in the U.S. is unconscionable. As the U.S. continues to combat the current COVID-19 cycle and prepares for future pandemics, it will be critical to learn from and rectify past and contemporary wrongs. Drawing on experiences in genomic research and intersecting areas in medical ethics, health disparities, and human rights, this article considers three key COVID-19-related issues: research to identify remedies; testing, contact tracing and surveillance; and lingering health needs and disability. It provides a pathway for the future: community engagement to develop culturally-sensitive responses to the myriad genomic/bioethical dilemmas that arise, and the establishment of a Truth and Reconciliation Commission to transition the country from its contemporary state of segregation in healthcare and health outcomes into an equitable and prosperous society for all.

Policies and Practices to Address Cancer's Long-Term Adverse Consequences.

As cancer detection and treatment improve, the number of long-term survivors will continue to grow, as will the need to improve their survivorship experience and health outcomes. We need to better understand cancer and its treatment's short- and long-term adverse consequences and to prevent, detect, and treat these consequences effectively. Delivering care through a collaborative care model; standardizing information offered to and collected from patients; standardizing approaches to documenting, treating, and reducing adverse effects; and creating a data infrastructure to make population-based information widely available are all actions that can improve survivors' outcomes. National policies that address gaps in insurance coverage, the cost and value of treatment and survivorship care, and worker benefits such as paid sick leave can also concurrently reduce cancer burden. The National Cancer Policy Forum and the Forum on Aging, Disability, and Independence at the National Academies of Sciences, Engineering, and Medicine sponsored a virtual workshop on "Addressing the Adverse Consequences of Cancer Treatment," November 9-10, 2020, to examine long-term adverse consequences of cancer treatment and to identify practices and policies to reduce treatment's negative impact on survivors. This commentary discusses high-priority issues raised during the workshop and offers a path forward.

Learning from and Leveraging Multi-Level Changes in Responses to the COVID 19 Pandemic to Facilitate Breast Cancer Prevention Efforts.

The coronavirus pandemic (COVID-19) has had multilevel effects on non-COVID-19 health and health care, including deferral of routine cancer prevention and screening and delays in surgical and other procedures. Health and health care use has also been affected by pandemic-related loss of employer-based health insurance, food and housing disruptions, and heightened stress, sleep disruptions and social isolation. These disruptions are projected to contribute to excess non-COVID-19 deaths over the coming decades. At the same time municipalities, health systems and individuals are making changes in response to the pandemic, including modifications in the environmental to promote health, implementation of telehealth platforms, and shifts towards greater self-care and using remote platforms to maintain social connections. We used a multi-level biopsychosocial model to examine the available literature on the relationship between COVID-19-related changes and breast cancer prevention to identify current gaps in knowledge and identify potential opportunities for future research. We found that COVID-19 has impacted several aspects of social and economic life, through a variety of mechanisms, including unemployment, changes in health care delivery, changes in eating and activity, and changes in mental health. Some of these changes should be reduced, while others should be explored and enhanced.

Talking about the Cost of Care: A Critical Component of Shared Decision Making Patient and Provider Perspectives.

Transparency about the costs that patients incur is an increasingly important factor in making decisions throughout the course of diagnosis and treatment. Both patients and providers regard honest, informed discussions about these costs as critical to providing person-centered care, but often encounter a range of barriers to initiating and maintaining these conversations. The Patient Advocate Foundation/National Patient Advocate Foundation with partial funding from the Robert Wood Johnson Foundation has conducted both quantitative and qualitative research with patients and providers designed to identify key issues related to cost of care discussions. These include components of financial toxicity for patients, both related to direct costs and to quality of life, as well as questions as to who should initiate these conversations, when they should take place, and what kind of information and training are needed to make these conversations meaningful. This article reports the results of this work with recommendations for providers about how to incorporate cost of care discussions into the normal clinical work flow and patient life flow.

Talking About the Cost of Care: A Critical Component of Shared Decision Making: Patient and Provider Perspectives.

INTRODUCTION: Transparency about the costs that patients incur is an increasingly important factor in making decisions throughout the course of diagnosis and treatment. Both patients and providers regard honest, informed discussions about these costs as critical to providing person-centered care, but often encounter a range of barriers to initiating and maintaining these conversations. METHODS: The Patient Advocate Foundation/National Patient Advocate Foundation with partial funding from the Robert Wood Johnson Foundation has conducted both quantitative and qualitative research with patients and providers designed to identify key issues related to cost of care discussions. RESULTS: Key issues identified include components of financial toxicity for patients, both related to direct costs and to quality of life, as well as questions as to who should initiate these conversations, when they should take place, and what kind of information and training are needed to make these conversations meaningful. CONCLUSIONS: This article reports the results of this work with recommendations for providers about how to incorporate cost of care discussions into the normal clinical work flow and patient life flow.

Cancer research advocacy: past, present, and future.

In this article, we present a brief history of cancer advocacy and discuss the variety of ways advocates have become involved in cancer research and subsequently present principles that establish a framework for successful research advocacy based on a review of many early initiatives coupled with our knowledge as long-time cancer advocates. Challenges to effective advocacy are described, and recommendations for increasing meaningful contributions by research advocates are proposed. The purpose of this article is to discuss the exciting field of research advocacy and to help shape a more productive future for advocates and their scientific collaborators.