As the march to transition from volume to value increases in health care — particularly toward a system where treatments are priced according to their relative benefit to patients — payers are increasingly turning to research findings and evidence synthesis that include an economic evaluation, such as a cost-effectiveness analysis, of a therapy’s cost and benefits.
Patient advocates agree that assessing value is important to optimizing care; however, conventional economic evaluations often approach value assessment in ways that may not be representative of how patients experience an illness.
The impact of the illness and treatment on the outcomes that matter most to patients — such as the ability to work or stay active or the burden on family members who act as caregivers — are vital but can be missed. Costs that directly impact patients are often left out.
Thankfully, researchers are currently working to develop approaches to value assessment to ensure the patient voice is meaningfully incorporated. How is this being done? By listening directly to patients.
In 2016, the National Health Council developed a Value Model Rubric with input from patient groups, caregivers, family members, providers and other experts to guide the development of patient-centered value assessments. Stakeholders came away with a set of principles describing what meaningful engagement with patients looks like, so that value elements that truly matter to patients can be a part of a treatment’s value assessment. Four years later, the NHC has updated that rubric, again using stakeholder input to ensure the principles keep pace with the evolving science and methods of patient-centered value assessment.
In alignment with the need for evolving the science of patient engagement, the NHC is also happy to be a partner to the University of Maryland’s Patient-Driven Values in Healthcare Evaluation Center. At PAVE, researchers are working to take the science a step further by capturing and incorporating the patient voice to inform understanding of the elements of value important to patients – which must be included and considered in true value assessment.
PAVE is working to develop a framework that takes the “patient-informed societal perspective.” This means patients are engaged in informing key aspects of the research methods, including the outcomes on which intervention effects are measured, the time horizon over which they are measured, and the differences across patient types that should be accounted for.
PAVE is currently exploring this approach by identifying patient-driven value elements for treatments for chronic obstructive pulmonary disease. Value elements, such as the impact of the disease and treatment on the family, a patient’s ability to engage socially and remain active in the community, and the patient’s planning for the future, are being identified, quantified and will eventually be incorporated into the value assessments.
Meaningfully incorporating the patient voice does not necessarily mean entirely abandoning traditional approaches to measuring value. But, it does mean that research in the value assessment space is moving beyond traditional approaches to advance, append or refine current methods in a way to best capture the patient voice to produce rigorous, patient-centered value assessment.
Eleanor M. Perfetto, Ph.D., MS, is the executive vice president of strategic initiatives at the National Health Council.
Elisabeth M. Oehrlein, Ph.D., MS, is the senior director of research and programs at the National Health Council.
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