These care guidelines should be based on the best available evidence for prevention, screening, diagnosis, treatment, survivorship, palliative care and end-of-life care, specifically those established by reputable professional societies and regulatory agencies, such as the NCCN Guidelines for Treatment by Cancer Type and NCCN Guidelines for Supportive Care, the ASCO Clinical Practice Guidelines, ASTRO’s Clinical Practice Guidelines, and the American Cancer Society Guidelines for Cancer Screening and Prevention.

• ­Provide carriers with
  • recommendations for high quality, patient centric, evidence-based, cancer care guidelines, including a list of trustworthy professional societies and guidelines organizations.

Resources: NCCN Guidelines; ASCO Clinical Practice Guidelines; ASTRO Clinical Practice Guidelines; American Cancer Society Prevention and Early Detection Guidelines

Carriers should require that treatment recommendations about initial cancer diagnosis, treatment planning, management, and surveillance, all of which are critical in determining long-term outcomes, are made by experienced professionals working in cancer centers that have consistently demonstrated an ongoing ability to deliver high quality, patient centered, cancer care. 

• Require carriers to
  • provide their standards for physician inclusion in local networks.
  • provide a listing of subspecialty specific oncology providers.
  • define how they will fill gaps in subspecialty providers.

Resources: NCCN Member Institutions; NCI Designated Cancer Centers; Impact of Care at Comprehensive Cancer Centers

Measure and monitor the quality of care being provided by individual clinical care teams and cancer centers, using a core set of quality measures. Use these measures to hold providers, including healthcare systems, health plans, and physicians accountable for demonstrating that they provide high quality care.

• ­Require carriers to
  • provide their quality measures for provider performance.
  • report annually, by subspecialty, on provider performance.
  • define how they handle documented poor performance.
  • report on total cost of care by provider.

Resources: NCCN Quality & Outcomes Committee Endorsed Measures; ASCO Quality Oncology Practice Initiative (QOPI®) Program Measures; ASCO Choosing Wisely List; Commission on Cancer Optimal Resources for Cancer Care (2020 Standards)

Ensure access to evidence-based cancer screenings, evidence-based genetic/genomic testing, and risk factor counseling from appropriately trained professionals.

• ­Provide up-to-date information for age appropriate screenings and surveillance.
• Require carriers to utilize NCCN Guidelines and/or other peer reviewed published literature in order to:
  • provide coverage for age and risk appropriate cancer screenings.
  • provide coverage for evidence-based genetic testing.
  • provide coverage for evidence-based genomic testing.
  • provide coverage for risk factor counseling from appropriately trained professionals.

Resources: American Cancer Society Cancer Screening Guidelines; NCCN Guidelines for Patients: Lung Cancer Screening; NCCN Guidelines for Detection, Prevention, and Risk Reduction; ACS CAN Biomarker Recommendations

Promote participation in relevant clinical trials and explain to eligible plan members the benefits of such participation. Coverage for clinical trials should include all services and testing required by the approved clinical trial protocol.

• ­Require carriers to
  • provide coverage for appropriate clinical trials.
  • Provide coverage for genomic tests which include all genes and biomarkers which could confere patient eligibility to a clinical trial.
  • provide coverage for diagnostic testing and other surveillance required by the trials.
  • help promote patient participation in appropriate clinical trials.

Resources: ClinicalTrials.gov; Clinical Trials: What You Need to Know; Search for a Clinical Trial

Educate plan members on the most appropriate treatment guidelines for their specific situation, to help them make well informed decisions about their care.

• Provide plan members with:
  • links to patient information such as the NCCN Guidelines for Patients.
  • reliable sources of information about their specific situation, such as websites, professional societies, and non-profit organizations.
  • information and resources on what clinical trials are and why they should consider them for their treatment. Provide links to online clinical trials search engines.
  • reliable information about available support and counseling resources for their type of situation.
  • reliable information on possible long-term and late effects of cancer treatment and survivorship resources.
  • Information and resources about genetic and genomic testing and how it can inform treatment.

Resources: NCCN Guidelines for Patients Library; Cancer Hope Network: Patient Support Services; American Cancer Society Treatment Support Resources; NCI Patient Resources; NCI Patient Publication Resources

• Provide plan members with
  • clear, written questions to help them ask appropriate questions of their cancer care providers.
  • written guidance on how to establish personal goals for their treatment and care, and how to express these goals, along with their personal values, with their cancer care providers (to be developed).
  • written guidance on ways to appropriately work with their cancer care providers (to be developed).
  • written questions to help them ask appropriate questions of their providers (to be developed).

Resources: Patient Advocate Foundation Education Resource Library

Establish clear, written expectations for the cancer care providers treating plan members, and empower eligible plan members to share these expectations with their care team.

• Provide plan members with
  • handouts that can easily be shared with their cancer care providers (to be developed).
  • written guidance on ways to appropriately work with their cancer care providers (to be developed).

Resources: NCCN Guidelines for Patients Library; Patient Advocate Foundation Education Resource Library  

Provide employers with educational materials on the value of key plan design recommendations, links to important research that supports value based outcomes, and links to model benefit language that supports these recommendations.

Provide plan members with access to a full complement of support services and resources, considered necessary to implement the approved care plan.

• ­Require carriers to
  • provide coverage for age appropriate support services.
  • provide coverage for survivorship care services.
  • provide coverage for palliative care services.
  • provide coverage for home health services.
  • provide coverage for hospice and end of life care.

Resources: NCCN Guidelines for Adolescents and Young Adults; NCCN Guidelines for Survivorship; NCCN Guidelines for Older Adult Oncology; NCCN Guidelines for Palliative Care; Memorial Sloan Kettering Supportive Care Services in Oncology; Impact of Care at Comprehensive Cancer Centers

Provide plan members with appropriate coordination of care and psychosocial support services.

• ­Require carriers to
  • provide coverage for patient care coordination services.
  • provide coverage for appropriate mental health services.

Resources: NCCN Guidelines for Patients: Distress During Cancer Care; NCCN Guidelines for Older Adult Oncology; NCCN Guidelines for Palliative Care; American Cancer Society Managing Cancer Related Side Effects

Ensure quality of care for advanced stages of disease, especially at the end of life. Plan members should be provided with appropriate management of cancer-related pain and early referral to palliative and hospice care. The advantages of palliative/supportive care services, as a part of the entire care continuum, should be explained at an early point in a new diagnosis.

• ­Require carriers to
  • provide coverage for palliative care services.
  • provide coverage for home health services.
  • provide coverage for hospice and end of life care.

Provide coverage for appropriate, evidence-based, rehabilitation and survivorship services.

• ­Require carriers to
  • provide coverage for physical and occupational therapy.
  • provide coverage for nutritional counseling, physical activity and fitness planning, weight management, smoking cessation, and wellness counseling.
  • provide coverage for long term survivorship services including management of late and long-term effects of cancer and cancer therapy.

Resources: NCCN Guidelines for Survivorship

Many patients report that continuing to work provides meaning, purpose and a sense of normalcy to their lives. Provide plan members with support services and appropriate accommodations that allow them to continue working as much as possible, and for as long as is appropriate.

• ­Provide plan members with
  • flexible hours, especially during treatments.
  • options to work away from the office, if appropriate.
  • assistance finding innovative ways to help them cope with their situation.

Provide financial and social services support and counseling that empower plan members to make well informed decisions about their treatment and their future.

• ­Provide plan members with
  • budgeting and financial counseling services.

Resources: Patient Advocate Foundation Financial Resources; Triage Cancer Financial Toolkit; Family Reach: Financial Treatment Program

Plan members should be educated about the appropriate resources that are available to help support their treatment, such as advance directives, palliative care, rehabilitation services, financial planning, and preparing for advanced stages of disease.

• ­Provide plan members with
  • a toolkit that will help them through their journey, such as information about advanced directives, potential legal issues, palliative care, and non-profit support groups.

Resources: NCCN Digital Book of Patient Advocacy Resources: Cancer Across the Lifespan

Encourage plan members to obtain a second opinion before having surgery, starting a new line of therapy, or beginning radiation treatment, as appropriate to their situation.

• ­Require carriers to
  • provide coverage for at least one full second opinion evaluation, including diagnostic services, from a major cancer center specializing in the plan member’s specific type of cancer.

Resources: NCCN Member Institutions; NCI Designated Cancer Centers

Provide coverage for second opinions from leading academic cancer centers specializing in the plan member’s specific diagnosis, and who understand the importance of guideline-concordant care.

• ­Require carriers to
  • provide coverage for at least one full second opinion evaluation from an NCI-Designated Cancer Center specializing in the plan member’s specific type of cancer.
  • provide coverage for supplemental diagnostics, genetic testing, genomic testing, and other services required for giving a sound opinion.

Resources: NCI Designated Cancer Centers; NCCN Member Institutions; NCCN Guidelines for Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic  and NCCN Guidelines for Genetic/Familial High-Risk Assessment: Colorectal

Provide coverage for appropriate, evidence-based surveillance protocols to detect relapses requiring further treatment including palliative and hospice care. 

• ­Require carriers to
  • provide coverage for survivorship services.

Resources: NCCN Guidelines; NCCN Guidelines for Survivorship

Provide financial and social services support and counseling that empower plan members to make well informed decisions about their treatment and their future.

• ­Provide plan members with
  • good budgeting and financial counseling services.
  • reliable information about available community support services.

Resources: NCCN Directory of Advocacy and Support Groups; Patient Advocate Foundation Education Resource Library

• Ensure access to high quality cancer centers that provide evidence-based, guideline-concordant treatments including surgery, chemotherapy, immunotherapy, targeted therapies, radiation therapy, and palliative care.
• Ensure that eligible plan members undergoing procedures that are technically difficult to perform and have been associated with higher mortality in lower-volume settings, receive care at facilities with proven experience and quality care.
• Provide treatment guidance and care coordination to plans members to promote and enhance well informed, shared decision making. 

Resources: NCCN Member Institutions; NCI Designated Cancer Centers

Provide coverage for care coordination and patient navigation services to promote and enhance well informed, shared decision making.

Resources: Patient Advocate Foundation Education Resource Library; NCCN Digital Book of Patient Advocacy Resources: Cancer Across the Lifespan

Provide coverage for social workers. Help plan members identify and connect with local community resources for assistance with a wide variety of needs.

Resources: NCCN Directory of Advocacy and Support Groups; Cancer Hope Network: Patient Support Services

Help affected plan members make wise financial decisions about their treatment and their future by providing options for medical savings plans and financial counseling.

Resources: Patient Advocate Foundation Financial Resources; Triage Cancer Financial Toolkit; Family Reach: Financial Treatment Program

Provide social services support and counseling that empower plan members to make well informed decisions about their treatment and their future.

Resources: NCCN Digital Book of Patient Advocacy Resources: Cancer Across the Lifespan; NCCN Directory of Advocacy and Support Groups

Provide employers with access to their deidentified, aggregated healthcare data to use in their strategic planning.

• ­Provide employers with
  • aggregated performance, and total cost of care data from their health plan and/or PBM (Pharmacy Benefit Manger)/EHR (Electronic Health Record).
  • quality and outcomes data on the hospitals and physicians providing cancer care to their plan members.

Promote improved employee outcomes through all avenues including, but not limited to, encouraging: medication adherence, healthy diet and exercise (or physical therapy when appropriate), smoking cessation, providing psychiatric care, health literacy to promote satisfaction with care, and patient care coordination resources.

Provide easily accessible, evidence-based cancer prevention information and materials to plan members in either hard copy or electronic format.

Promote transparency of the costs and quality of care they purchase, including reasonable estimates of the out of pocket costs assumed by plan members.

Resources: NCCN Guidelines for Survivorship; NCCN Guidelines for Detection, Prevention, and Risk Reduction

Plan Member, Patient, Insured, Beneficiary

Individuals with a cancer related diagnosis, condition, or concern, and to whom these Guiding Principles are designed to support, benefit, and encourage, are referred to in this document as a “plan member.” We recognize that each organization utilizing this document may have their own specific term for this individual, including common terms such as “patient,” “insured,” “beneficiary,” and others. The term “Plan Member” is intended to be inclusive of anyone to whom these Guiding Principle may be a benefit.

What is Evidence-Based Cancer Care?

Evidence-based cancer care is a comprehensive approach to promoting the highest quality of care for patients and their families, through the thorough, precise, and reasonable use of a continuous review of the best available knowledge, clinical experience, scientific research, and expert consensus in the development of individual medical decisions, care guidelines, and healthcare policies.

Cancer care is unique in its global acceptance and use of a single set of clinical practice guidelines for patient care and coverage determinations. NCCN Guidelines are internationally accepted as the authoritative voice defining the highest standard of evidence-based care in oncology clinical practice (Desai, 2020) NCCN Guidelines document evidence-based, consensus-driven management to ensure that all patients receive preventive, diagnostic, treatment, and supportive services that are most likely to lead to optimal outcomes.

NCCN Guidelines provide recommendations based on the best evidence available at the time they are derived and are continuously updated and revised to reflect new data and clinical information that may add to or alter current clinical practice standards. Read more about the NCCN Guideline process here.

What is Patient Centered Care?

Patient-centered care is the practice of caring for patients and their families in ways that are meaningful and valuable to the individual patient.  It includes listening to, informing, and involving patients in their care. The Institute of Medicine defines patient-centered care as: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”

What is High Value Care?

High Value Care means providing the best possible care, as efficiently as practicable, and achieving optimal results for each patient. Value is finding the optimal balance between providing the right services, at the right time, for the right cost, with the right outcomes (quality).

What is “Financial Toxicity”?

The combination of the direct financial challenges of paying for cancer treatment, and the more subjective emotional stresses that financial worries create, have been broadly termed “financial toxicity.” Financial toxicity includes the unintended financial consequences and distresses of medical treatment, reflecting a patient’s total financial burden from the situation.

What is the difference between genetic and genomic testing?

Genetics is a term that refers to the study of genes and their roles in inherited traits. It describes the way that certain traits or conditions are passed down from one generation to the next. Genetic testing is used to identify the hereditary characteristics of an individual. The results of a genetic test can confirm or rule out specific hereditary conditions.

Genomics is a more recent term that describes the study of all of a person's genes (the genome), how those genes interact with each other, how they respond to environmental factors, and also how those genes may potentially be malfunctioning. Different from genetic testing, genomic testing is used to help identify mutations, alterations, and/or problems in multiple genes, that may be driving the growth of a specific tumor. Information about genomic mutations that are unique to a specific cancer may help doctors identify treatments designed to target those conditions.

Pharmacogenomic testing is used to help clinicians identify and select the treatment that is likely to be the most effective for the patient’s unique situation and condition.

Cancer Facts & Figures (2020). American Cancer Society. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2020.html

Chino, Peppercorn, Rushing, Samsa, Nicolla, Altomare, & Zafar. (2016). "Going for Broke": Out-of-Pocket Costs, Financial Distress, and Patient-Reported Willingness to Pay and Sacrifice in Cancer Care. International Journal of Radiation Oncology, Biology, Physics, 96(2), S135-S136.

Gilligan, Alberts, Roe, & Skrepnek. (2018). Death or Debt? National Estimates of Financial Toxicity in Persons with Newly-Diagnosed Cancer. The American Journal of Medicine, 131(10), 1187-1199.e5.

Hundorfean, Cynthia (2018). Financial Toxicity of Cancer Treatment: Our cancer care challenge. Managed Healthcare Executive, 28.11: p5.

May, Carl, Eton, David, Boehmer, Kasey, Gallacher, Katie, Hunt, Katherine, Macdonald, Sara, . . . Shippee, Nathan. (2014). Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Services Research, 14(1), 281.

Meisenberg, B. (2015). The financial burden of cancer patients: Time to stop averting our eyes. Supportive Care in Cancer, 23(5), 1201-1203.

Phillips, & Currow. (2010). Cancer as a chronic disease. Collegian, 17(2), 47-50.

Sackett, D. L. (1998). Evidence-Based Medicine*. Spine, 23(10), 1085-1086.

Wolfson, J., Sun, C., Wyatt, L., Hurria, A., & Bhatia, S. (2015). Impact of care at comprehensive cancer centers on outcome: Results from a population‐based study. Cancer, 121(21), 3885-3893.

Yabroff, K. R., Gansler, T., Wender, R. C., Cullen, K. J., & Brawley, O. W. (2019, February 20). Minimizing the burden of cancer in the United States: Goals for a high‐performing health care system - Yabroff - 2019 - CA: A Cancer Journal for Clinicians - Wiley Online Library. Retrieved from https://onlinelibrary.wiley.com/doi/full/10.3322/caac.21556

Zafar, S. Y. (2015). Financial Toxicity of Cancer Care: It’s Time to Intervene. Journal of the National Cancer Institute, 108(5). doi:10.1093/jnci/djv370

Zafar, S. Y., Abernethy, A. P. (Feb. 2013). Financial toxicity, Part I: a new name for a growing problem. Oncology.

Zafar, S. Y., Abernethy, A. P. (Apr. 2013). Financial toxicity, Part II: how can we help with the burden of treatment-related costs? Oncology.

• Mary Bradley: Health Transformation Alliance 
• Wayne N Burton, MD: Retired, American Express
• Chris Goff: Employers Health 
• Neil Goldfarb: Greater Philadelphia Business Coalition on Health
• Emma Hoo: Purchaser Business Group on Health 
• Michael Kolodziej: ADVI 
• Cheryl Larson: Midwest Business Group on Health
• Jason Parrot: Boeing
• Angie Patterson: Georgia CORE 
• Candice Sherman: Northeast Business Group on Health 
• Karen van Caulil, PhD: Florida Alliance for Healthcare Value Coalition
• Jennifer Wagner: Business Group on Health
• Lynn Zonakis: The Zonakis Group