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Valuing communication and communicating value: Staying in touch with our patients’ priorities
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Although the presidential election result has raised questions about the direction of health care reform, most experts believe that value will remain a driving force.
Definitions of value vary between health care experts, but whatever equation is used, key factors include components of cost, quality, service and outcomes.
Most publications and commentary on the value proposition in cancer care has come from health care experts, providers, systems and payers. Despite the recognition of patient involvement and the patient perspective in the individual components of the value equation, there has been relatively little comment on a patient-centered approach to defining and determining value for patients and caregivers.
Two-way communication
I attended a National Comprehensive Cancer Network–sponsored patient advocacy summit that explored aspects of patient-centered value in cancer care. The meeting involved a diverse collection of health care providers, patient advocacy groups, biotech and pharmacy companies, payers and cancer survivors.
I left the summit with new insights into what factors define value from a patient perspective and how much work we have to do to fully engage patients in decisions regarding their cancer.
Two major themes emerged for me. First, the two-way communication between us and our patients and their caregivers is inadequate. Too often, we provide information that our patients do not understand, and we neither hear nor address the patients’ priorities, preferences and concerns.
Second, costs of care become a major driver of treatment decisions for some of our patients but, again, the impact of costs in the most general sense frequently is ignored and often not part of the treatment decision process. From a patient perspective, being fully engaged and informed during the management decision-making process, and factoring cost considerations into that discussion, are key components of value.
The Cancer Support Community published a report on access to cancer care in the United States in 2016 from the perspective of patients. The report is based on questionnaire responses from more than 1,000 patients with various cancer types, a spectrum of cancer treatment experiences, and an apparently representative demographic and pattern of coverage for health care.
Some themes that emerged from the report are not surprising. The impact of cost of care — and the resulting disparities — are well published, but this report provides a patient-centered context for the financial toxicity of cancer care.
More than 40% of those questioned reported that their out-of-pocket costs were higher than expected, 68% had no discussion of treatment costs with their care team prior to starting therapy, and more than 20% reported that they skipped recommended treatments to manage out-of-pocket costs. About 50% of patients reported that some aspect of their care was delayed because of issues related to insurance — most commonly prior authorization for a test or a treatment. These delays were most common for patients without private insurance; the highest rates were for those with Medicaid.
A similar lack of adequate information and inclusion was reported for other aspects of decision-making. Almost 40% of respondents stated they would have liked to have been more involved in decision-making. Disturbingly, patients covered by Medicaid and those who obtained coverage in the marketplaces were less likely to have had adequate time with their providers to discuss their treatment decisions — another source of apparent disparity.
Despite the increasing influence that guidelines have on oncology practice, more than 50% of patients had not heard of clinical guidelines and more than 70% were unaware of care pathways. So, pathway and guideline adherence — important quality metrics for us as providers — apparently have not penetrated our patient and caregiver value framework. Clearly, our concepts of value are not fully aligned with those of our patients.
Culture of care delivery
Patient centeredness in value will prove to be essential not only in routine decision-making, but also in clinical trial design.
New treatment strategies that do not incorporate endpoints related to quality and value — and that ignore the impact these therapies have on all aspects of life for patients and their caregivers — will struggle for acceptance and approval. This argues strongly for engaging patient advocates very early in the drug/treatment–development process so manufacturers and researchers can incorporate relevant endpoints into their studies from the earliest phase.
Another aspect of communication that emerged as a major value driver for patients is that between health care providers and systems. Lack of exchange of information and coordinated care as patients move within and between various facilities is appropriately seen as a sign of low quality and value. The complex, multidisciplinary nature of cancer care increases the potential for failures in communication.
Although interconnectivity of electronic health records is part of the solution to this problem, there is no question that it also is partly cultural. Although many of us believe that we deliver care in a multidisciplinary, team-based way, the NCI–ASCO Teams in Cancer Care Project is beginning to explore the application of team science in oncology.
Some of the preliminary work from this project is summarized in a special volume of Journal of Oncology Practice, published in November. This introduces us to team concepts, such as shared-mental models, back-up behavior, closed-loop communication, transactive memory and psychological safety.
This may sound like more trendy jargon — which it is — but there is compelling evidence from many industries and in some other medical disciplines, such as critical and intensive care, that real teams have better outcomes than collections of individuals. Our patients recognize this. We will need to work on a shift in our culture of care delivery or risk failing to meet their needs.
The recent summit and the early progress of the NCI–ASCO Team Project report many initiatives to improve value as perceived by patients. These range from applying team science to our care delivery models to decision-support tools designed to incorporate clinical data with patient priorities and preferences to provide a personalized treatment for each patient.
These efforts will be essential to make sure that we deliver care for each of our patients that recognizes their perception of value and their priorities and goals, as well as those of their caregivers. We need to stay engaged and in touch with our patients to understand what is most important and relevant to them.
On the subject of staying in touch with what matters to our patients, I cannot help but pass comment on recent reports regarding lawsuits filed over who “owns” the cancer moonshot title. Assuming that the reports of lawsuits for trademark protection are true, I wonder whether patients with cancer will regard this as a good use of resources and effort.
I have a feeling they might think there are more important priorities. We should listen to them.
References:
Cancer Support Community. Access to care in cancer 2016: Barriers and challenges. Available at: www.cancersupportcommunity.org/events/access-care-cancer-2016-barriers-and-challenges. Accessed on Dec. 13, 2016.
Special series: NCI–ASCO Teams in Cancer Care. J Onc Practice. 2016;12:955-1194.
For more information:
John Sweetenham, MD, is HemOnc Today’s Chief Medical Editor for Hematology. He also is senior director of clinical affairs and executive medical director of Huntsman Cancer Institute at University of Utah. He can be reached at john.sweetenham@hci.utah.edu.