While the navigator was not familiar with the concept of value frameworks, three of the six oncologists had heard about the NCCN framework, but not about the ASCO framework. None of the oncologists had used either framework. One oncologist saw the NCCN framework as potentially useful, but all expressed concerns about its practicality as information was difficult to capture quickly and definitions for the ratings were missing. They pointed out that none of the frameworks reflected actual costs of the therapy for the patient, or considered duration of therapy as described by participant # 4: “(…) some drugs like ibrutinib people stay on forever, and [for] some treatments it’s a limited treatment, and they take six months of treatment and then they’re [done]; they don’t have anything … for two years … so the monoclonal antibodies … alone would be that way. So … your cost is going to be much greater in something that you take forever.” The oncologists also pointed out the difficulty of differentiating between a health system perspective and a patient perspective when considering such value ratings as highlighted by participant # 1: “The struggle with some of these rankings, and they call it value frameworks, […], [is] trying to find the, […] balance between the health system’s perspective and the patient’s and provider’s perspectives”. While the tools may address value (outcomes in relation to cost) on average, they do not address value or cost for the individual, which is important when making decisions with consideration of their clinical benefit and their financial impact on the patient. Overall, the oncologists emphasized the need for tools such as the NCCN and ASCO frameworks, but felt such tools would need to be easier to understand, be based on actual patient costs, and include useful benchmarks. For example, ratings of effectiveness and adverse effects of tamoxifen could be compared with those of aromatase inhibitors. For the tools to be used, oncologists would require training and assurance that development was free of biases that may influence ratings.
In summary, OOP expenses are of great concern for cancer patients. As documented by prior research, high OOP expenses can lead to delayed filling of prescriptions, skipping doses of medications risking negative clinical outcomes, and to bankruptcy of cancer patients [7,8,9]. Patients and physicians need to talk about OOP expenses [10, 11], however major barriers to those conversations exist, including lack of information on actual patient OOP costs given their insurance benefit type, and, for patients in high-deductible plans, where they are in meeting their annual deductible . Like elsewhere [3, 13, 14], the navigator is key to conversations about OOP costs in the community oncology practice we studied. Existing value frameworks are not designed for use in the real-world patient–oncologist–navigator interactions. Even though oncologists showed general interest in using value frameworks to select treatments, they found the current presentation and information in the ASCO and NCCN frameworks insufficient. In addition, value comparisons of alternative treatments where they exist, e.g. injectable treatments  with lower OOP burden than oral anticancer medicines , are not considered in current value frameworks.
To facilitate discussion of OOP costs in cancer treatment selection, better tools are needed that inform decision making of patients, oncologists, and financial navigators. Such tools should provide comparative clinical and cost information, including patient OOP expenses given insurance coverage at the point of prescribing; they should come from trusted independent organizations and be accompanied by hands-on training in their use for providers and financial navigators.