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Abstract

US healthcare systems have been deeply impacted by significant societal shifts over the past several years. The COVID-19 pandemic has changed the way we interact with healthcare, political narratives have impacted how healthcare is perceived and engaged with by the public, and the United States has become increasingly aware of historic and ongoing racial injustices across all health and social systems. The watershed events experienced during the last several years play a critical role in shaping the future of cancer care for payers, providers, manufacturers, and, most importantly, patients and survivors. To explore these issues, in June 2021 NCCN convened a virtual policy summit: Defining the “New Normal” — 2021 and the State of Cancer Care in America Following 2020. This summit offered the opportunity for a varied group of stakeholders to begin to explore the impact of recent events on the current and future state of oncology in the United States. Topics included the impact of COVID-19 on cancer detection and treatment, the role of innovation in ensuring continuity of care, and efforts to create more equitable systems of care.

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.

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.

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.

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.

Cancer prevention, screening, and early detection play an integral role in cancer incidence and outcomes. It is estimated that 30% to 50% of cancers worldwide are preventable, and it is well established that early detection of many cancers is associated with improved treatment outcomes. A recent NCCN Policy Summit: Reducing the Cancer Burden Through Prevention and Early Detection brought together healthcare providers, payers, policymakers, patient advocates, industry representatives, and technology representatives to explore challenges, triumphs, and outstanding questions surrounding current practices. Keynotes were delivered by Dr. Lisa Richardson, Director of the Division of Cancer Prevention and Control within the CDC, and Dr. Danielle Carnival, White House Cancer Moonshot Coordinator. Dr. Richardson focused on the field of public health, translating its utility in preventing and diagnosing cancer in the United States, while Dr. Carnival discussed ambitious goals by the Cancer Moonshot in reducing the cancer burden. Panelists highlighted characteristics of high-impact prevention and early detection programs, including how genetic testing has impacted this space. Existing programs are often challenged due to limitations in data, as well as financial, structural, and social barriers to motivating individuals to act on recommendations. Despite these barriers, we can learn from highly successful programs and should apply proven attributes, such as community engagement, more broadly.

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.

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.

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.

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.