Partnering on America’s toughest challenges

Helping the White House Cancer Moonshot address the needs of young adults with cancer

The National Cancer Institute (NCI) estimates that nearly 86,000 adolescents and young adults (AYAs, aged 15 to 39 years) are diagnosed with cancer each year in the United States, and it reported a small but steadily increasing incidence rate between 2010 and 2019. AYAs with cancer experience unique challenges due to their developmental life stage, and many have limited access to support and resources. McKinsey served as a knowledge partner to CC–Connect (Childhood Cancer–Connect), the patient assistance component of the White House Cancer Moonshot CC–DIRECT (Childhood Cancer–Data Integration for Research, Education, Care, and Clinical Trials) initiative that aims to help families impacted by childhood cancer find the best care for their children. Through this work, a journal article was developed and published with the following findings.

Opportunities

Stakeholder interviews and a roundtable identified five key categories to better meet patient assistance needs:
Accessing educational resources
Accessing quality information to set expectations about clinical treatment and prognosis, find resources, and set priorities for decision-making
Finding the right care
Finding resources to support decision-making about where to go, who to see, and how to get there, from the initial suspicion of cancer onwards
Getting psychosocial support
Finding emotional and social support to improve the cancer journey and help with expectation management, logistics of care, decision-making, and advocating for patient needs at point of care
Understanding financial implications
Understanding the financial implications of cancer treatment for both insured and uninsured patients
Managing the health record
Understanding what information to bring, how to provide it, and how to grant permission for it to be used for care

Strategies

The CC–Connect manuscript laid out four strategies to address the challenges of navigating AYA cancer from diagnosis across the care continuum:

  • Leverage technology, such as scaling portable electronic health records tailored to AYA cancer patients’ specific needs, to ensure that all patients can access appropriate care, psychosocial support, and the information needed to support their care journey
  • Enhance peer-to-peer support for clinicians to foster regional referral and communication networks between primary care, community oncologists, and academic medical centers to improve timely and high-quality access to care
  • Reduce insurance barriers by creating educational resources to assist patients and their families in navigating the complexities of insurance and financial assistance programs
  • Emphasize quality care for AYAs in existing accreditation programs to ensure that AYA-specific care standards are recognized within existing frameworks to enhance the quality of care provided to this vulnerable group

Childhood Cancer (CC)–Connect is a vital component within the cancer care trajectory in that it focuses on the resources needed to bridge the gap in needs and services for adolescents and young adults who navigate a unique set of challenges in their transition to adult care. It’s a transformative effort in health data sharing for childhood cancer survivors and will identify and create resources and pathways for the continuity of care among this population as part of this one-of-a-kind public-private partnership, NCI’s CC–Direct initiative.

Tara Henderson, MD, MPH, FASCO

In alignment with the White House Cancer Moonshot to ‘end cancer as we know it,’ CC–Connect serves as an opportunity to identify much-needed educational resources and support for adolescent and young adult patients. Coordination and management of aspects such as health records will help patients and their caregivers navigate their care from diagnosis to survivorship. This framework amplifies ASCO’s mission to conquer cancer through research, education, and promotion of the highest quality, equitable patient care.

Janette Merrill, DHA

Connect with the Public Affairs team

Contact us