Research shows that racial disparities exist in the delivery of guideline-adherent cancer care, and that non-White patients are less likely to receive guideline-concordant care than White patients, leading to worse health outcomes. However, these disparities are not often addressed. The Elevating Cancer Equity initiative aims to address these disparities through policy-change recommendations developed by a working group and informed by data from patients/caregivers and oncologists. The hope is that the results of these surveys and the resultant recommendations will be a step toward cancer care equity in the United States.
Presenters: Shonta Chambers, Elizabeth Harrington, Lisa A. Lacasse, Robert Winn, and moderated by Alyssa A. Schatz
Alyssa A. Schatz, Keysha Brooks-Coley, Elizabeth Harrington, Mary Stober Murray, and Robert W. Carlson
Background: Cancer prevention and treatment systems are significantly impacted by interpersonal, organizational, and structural and systemic racism. A wide body of research has found that racial disparities in access to guideline-adherent cancer care are pervasive throughout the United States and contributing factors include social determinants of health, insurance status, and bias and discrimination in care delivery. Although the existence of racial disparities in cancer care and outcomes is well established, there has been limited research exploring the patient and caregiver experience with bias and discrimination in cancer care. Methods: Two national surveys were conducted, one of patients and caregivers and one of oncologists. The surveys examined patient and caregiver experiences with and oncologist perceptions of racial disparities in cancer care. Results: The surveys found that when patients and caregivers were asked about negative care experiences, differences across race were observed. Patients and caregivers identifying as African American/Black (AA/B) or Hispanic/Latino (H/L) were more likely to report at least one negative care experience than patients and caregivers identifying as White (W). Patients who were AA/B or H/L were also more likely than W patients to report that the healthcare system treats people unfairly based on their racial or ethnic background and that racial bias occurs often or very often when a patient and doctor are of different racial/ethnic background. A slight majority of oncologists reported that the healthcare system treats people unfairly based on their racial or ethnic background. Conclusions: The survey results highlight a need for improved racial representation in the oncology professional workforce, improved implicit bias training, and improved clinical trial recruitment efforts.
Presenters: Thomas A. Farrington, Liz Margolies, Shonta Chambers, Maria D. Garcia-Jimenez, and Alyssa A. Schatz
Moderator : Carmen E. Guerra
Many people with cancer have benefited from the host of therapeutic and research advances across many different tumor types over the past decades. However, not every patient with cancer is afforded the opportunity for such treatments, and there is an assortment of notable barriers to the delivery of equitable care for all. To address the complexity of this important issue in contemporary cancer care, a distinguished panel at the NCCN 2022 Annual Conference, moderated by Carmen E. Guerra, MD, MSCE, explored this topic from several different vantage points, including the patient perspective and the view from inside the LGBTQ+ community. In addition, several panel members explored the constructive steps and initiatives being taken in the clinical, research, and policy realms to improve access to care for all patients with cancer, as well as overall health equity.
Alyssa A. Schatz, Katy Winckworth Prejsnar, James McCanney, Meghan Gutierrez, Stefanie Joho, Joseph Alvarnas, and Robert W. Carlson
In recent years, oncology has seen a rapid increase in the introduction of high-cost innovative therapies while scrutiny around drug pricing has simultaneously amplified. Significant policy shifts impacting health coverage and benefit design are also being implemented, including narrow network health plans, uncertainty around the Affordable Care Act insurance exchanges, and threats to preexisting condition protections. Shifting health coverage policy combined with high drug prices and outdated reimbursement systems may create barriers to patient access to innovation and high-quality cancer care. To understand how trends in health policy are impacting the oncology ecosystem, NCCN convened the NCCN Policy Summit: Policy Strategies for the “New Normal” in Healthcare to Ensure Access to High-Quality Cancer Care on June 25, 2018. The summit included discussion of how innovation is changing cancer treatment, care delivery, and ways health systems are responding; the impact of narrow networks on access to academic cancer centers; and how the evolving health policy landscape is affecting access to high-quality cancer care for patients.
Kara Martin, Alyssa A. Schatz, Jan S. White, Hyman Muss, Aarati Didwania, Leigh Gallo, and Robert W. Carlson
Patients with cancer have widely divergent experiences throughout their care from screening through survivorship. Differences in care delivery and outcomes may be due to varying patient preferences, patient needs according to stage of life, access to care, and implicit or explicit bias in care according to patient age. NCCN convened a series of stakeholder meetings with patients, caregivers, and patient advocacy groups to discuss the complex challenges and robust opportunities in this space. These meetings informed the NCCN Virtual Patient Advocacy Summit: Cancer Across the Lifespan held on December 10, 2020, which featured a keynote presentation, multidisciplinary panels, and presentations from patient advocacy organizations. This article encapsulates and expounds upon the findings from the stakeholder meetings and discussions during the summit.
Leigh Gallo, Ronald S. Walters, Jeff Allen, Jenny Ahlstrom, Clay Alspach, Yelak Biru, Alyssa Schatz, Kara Martin, and Robert W. Carlson
The 21st Century Cures Act (Cures Act), signed into law in 2016, was designed to advance new therapies by modernizing clinical trials, funding research initiatives, and accelerating the development and use of health information technology. To analyze the current issues in cancer care related to the implementation and impact of the Cures Act, NCCN convened a multistakeholder working group. Participants discussed the legislation’s impact on the oncology community since enactment and identified the remaining gaps and challenges as experienced by stakeholders. In June 2020, the policy recommendations of the working group were presented at the virtual NCCN Policy Summit: Accelerating Advances in Cancer Care Research: A Lookback at the 21st Century Cures Act in 2020. The summit consisted of informative discussions and a multistakeholder panel to explore the recommendations and the future of the Cures Act. This article explores identified policy recommendations from the NCCN Working Group and the NCCN Policy Summit, and analyzes opportunities to advance innovative cancer care and patient access to data.
James McCanney, Katy Winckworth-Prejsnar, Alyssa A. Schatz, Elizabeth A. Nardi, Andrea J. Dwyer, Christopher Lieu, Yelak Biru, and Robert W. Carlson
As a disease, cancer can affect an individual's well-being, from physical to psychological, social, and even spiritual wellness. The cancer survivor population must navigate a complex, constantly evolving field, with the assistance of their care team, to conquer the disease. To address the unmet needs of the cancer survivorship community, NCCN conducted an environmental scan of existing and emerging aspects of survivorship cancer care through stakeholder meetings with survivors and patient advocacy groups to discuss needs, opportunities, and challenges in providing high-quality, patient-centered cancer survivorship care. The findings of this environmental scan directly informed the corresponding NCCN Patient Advocacy Summit: Addressing Survivorship in Cancer Care, held in Washington, DC, on December 1, 2017. In addition to the many patient advocacy groups, the summit featured stakeholders from all relevant areas of survivorship care. This article encapsulates the findings of the thorough environmental scan and the discussion from the NCCN Patient Advocacy Summit, including identified gaps and needs in addressing survivorship in cancer care.
Jessica Sugalski, Theresa Franco, Lawrence N. Shulman, Pelin Cinar, James Bachman, Jennie R. Crews, MiKaela Olsen, Alyssa Schatz, and Timothy Kubal
The coronavirus pandemic has significantly impacted operations at leading cancer centers across the United States. In the midst of the chaos, at least one silver lining has emerged: the development of new, creative strategies for delivering cancer care that are likely to continue post pandemic. The NCCN Best Practices Committee, which is composed of senior physician, nursing, and administrative leaders at NCCN Member Institutions, conducted a webinar series in June 2020 highlighting the most promising and effective strategies to date. Experts from NCCN Member Institutions participated in the series to share their experiences, knowledge, and thoughts about the future of cancer care.
Elizabeth A. Nardi, James McCanney, Katy Winckworth-Prejsnar, Alyssa A. Schatz, Kerin Adelson, Marcus Neubauer, Mary Lou Smith, Ronald Walters, and Robert W. Carlson
Quality measurement in oncology is increasing in significance as payment schemes shift from volume to value. As demand for quality measures increases, challenges in the development of quality measures, standardization across measures, and the limitations of health information technology have become apparent. Moreover, the time and financial burden associated with developing, tracking, and reporting quality measures are substantial. Despite these challenges, best practices and leaders in the field of quality measurement in oncology have emerged. To understand the current challenges and promising practices in quality measurement and to explore future considerations for measure development and measure reporting in oncology, NCCN convened the NCCN Policy Summit: Redefining Quality Measurement in Oncology. The summit included discussion of the current quality landscape and efforts to develop quality measures, use of quality measures in various programs, patient perspective of quality, and challenges and best practices for quality reporting.
Katy Winckworth-Prejsnar, James McCanney, Alyssa A. Schatz, Warren Smedley, Leonidas C. Platanias, Cecil M. Benitez, Lee N. Newcomer, C. Lyn Fitzgerald, and Robert W. Carlson
Multiple factors are forcing the healthcare delivery system to change. A movement toward value-based payment models is shifting these systems to team-based integration and coordination of care for better efficiencies and outcomes. Workforce shortages are stressing access and quality of care for patients with cancer and survivors, and their families and caregivers. Innovative therapies are expensive, forcing payers and employers to prioritize resources. Patients are advocating for care models centered on their needs rather than those of providers. In response, payment policies have recently focused on the promotion of alternative payment models that incentivize coordinated, high-quality care with consideration for value and controlling the increasing overall costs associated with cancer and its treatment. Given the multitude of factors confounding cancer care, NCCN convened a multistakeholder working group to examine the challenges and opportunities presented by changing paradigms in cancer care delivery. The group identified key challenges and developed policy recommendations to address 4 high-visibility topics in cancer care delivery. The findings and recommendations were then presented at the NCCN Policy Summit: Policy Challenges and Opportunities to Address Changing Paradigms in Cancer Care Delivery in September 2018, and multistakeholder roundtable panel discussions explored these findings and recommendations along with additional items. This article encapsulates the discussion from the NCCN Working Group meetings and the NCCN Policy Summit, including multistakeholder policy recommendations on delivery issues in cancer care designed to help inform national policies moving forward.