Recommendation 2. Enable meaningful communication about treatment options, including cost information, to support patients’ decision making.

After discussion with their cancer care teams, patients should be empowered to identify and select treatments aligned with their needs, values, and preferences. To accomplish this, they must have:

• Accurate information about their diagnosis and prognosis;
• Clear understanding of recommended treatment options, including treatment purpose (e.g., cure, extended survival, palliation);
• Realistic expectations about possible clinical benefits and harms of treatment options; and
• Access to information about costs of treatment options.

Cancer care teams should tailor this information to the needs, preferences, and comprehension capacity of individual patients. This type of “precision communication” is essential to patient-centered cancer care.

Historically, discussions about cost have not been part of clinical care for cancer, but the Panel agrees with recommendations by the Institute of Medicine1 and American Society of Clinical Oncology (ASCO)2 that patients should be informed about the costs of care; in particular, out-of-pocket costs. In one survey, more than one-third of cancer patients reported higher than expected out-of-pocket costs, which was associated with increased likelihood of financial distress.3 Access to cost information potentially would enable patients to integrate costs, as they desire, into their personal value assessments of treatment options. Cost information also may help patients, families, and care teams identify ways to prevent or address financial toxicity (Recommendation 3).

Effective communication about drug value may lead to lower costs, but providing cost information to patients should not be viewed as a cost containment strategy. Cost should never hinder patients’ access to appropriate cancer treatments (Recommendation 1 and Recommendation 3).

Discussions of Treatment Cost and Value Should Be Improved

Nearly two-thirds of cancer patients express interest in communicating about cost, and most oncologists agree that patients should understand the financial implications of their treatment options. Despite this, discussions about cost are infrequent—only 27 percent of cancer patients and less than half of oncologists surveyed reported having had cost-related discussions.4

Research is needed to identify the best ways to communicate about cost and to help patients include cost in their assessments of treatment value. It will be important to determine how cost discussions affect clinical decision making and clinical outcomes, as well as patients’ quality-of-life, well-being, satisfaction, and financial toxicity. Several groups—including ASCO5 and the National Comprehensive Cancer Network6 (see Clinical Tools to Assess Treatment Value)—have begun developing tools to help physicians and patients incorporate cost into cancer treatment value assessments. The Patient-Perspective Value Framework developed by Avalere and FasterCures identifies additional patient and family costs that should be included in value assessments.7 These tools should be formally evaluated to determine whether they result in improved communication and decision making. Tools and strategies must be optimized for easy integration into clinical workflows and tailored to the specific circumstances of individual patients. Moreover, such tools and discussions should be developed and calibrated in recognition of patients’ diversity to ensure that cancer care disparities that disadvantage socioeconomically deprived patients are not created or exacerbated.

Patients Should Have Access to Cost Information

Lack of transparency often makes it difficult for patients to know how much they will be charged for their care and the portion they will be responsible to pay out of pocket.8,9 These numbers may vary considerably depending on the healthcare facility and patients’ insurance benefit plans. While there have been some efforts to address the problem—including price transparency laws in some states requiring health practices and hospitals to provide cost information and addition of cost-related features on insurance company websites—more extensive transparency is needed.10 The Panel urges payers and health systems to make cost and price information more widely available to patients and cancer care teams to facilitate informed decision making. In addition, research is needed to determine what information is most useful to patients (Recommendation 3).

Clinical Data Are Needed to Inform Decision Making

To enable value assessment, cost information should be considered in conjunction with potential clinical benefits and harms, including impact on patients’ quality of life. Ideally, each patient should be able to review clinical data that reflect outcomes in other patients with similar diseases and health characteristics. However, these data often are limited or unavailable, in part because clinical trial populations often are not representative of the general population. Moreover, a paucity of data exists on quality of life and patient-reported outcomes because they are collected inconsistently and in nonstandardized formats, if at all. Physicians should clearly explain any evidence gaps to patients and should also tell patients when a drug is unlikely to provide benefit.

As discussed in the Panel’s 2016 report, Improving Cancer-Related Outcomes with Connected Health,11 widespread adoption of health information technology is creating opportunities to address these knowledge gaps. In particular, standardized collection of patient-reported outcomes and use of learning healthcare systems that gather and analyze real-world data could generate valuable information for physicians and patients weighing treatment options. The need to “unleash the power of data” to improve cancer care and research also is a key theme in the 2016 Report of the Cancer Moonshot Task Force.12

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