Billionaire Warren Buffett was on target when he said, “Price is what you pay. Value is what you get.” Yet the issue of price seems to be the primary focus when discussing the value of health care services, in particular drugs.
There is no denying that the cost of care is a serious issue in this country. The federal government reported that in 2014 approximately 7 percent of the U.S. population delayed health care because they worried about the cost, and 5 percent did not receive needed medical care because they could not afford it.
But to focus solely on the cost of health care and not consider the value sought by the people receiving the care is shortsighted. As the Institute of Medicine pointed out back in 2010: “Identifying value in health care is more than simply the right care for the right price as it requires determination of the additional elements of the applicability and circumstances of the benefits considered.”
These elements of applicability and circumstances translate into a “value” definition that means different things to different people. For example, a study of patients with metastatic breast cancer showed that more patients emphasize value in terms of their personal benefit (such as being able to maintain rich relationships with family members) than in economic terms.
If patient-perceived value is important in determining meaningful care, then why is the patient voice not front and center in the health care value debate?
Various models and frameworks have recently been released to support physicians and payers in assessing the value of treatments. However, the patient community has expressed that it would like to see framework developers engage the patient community in a more meaningfully way. It is unclear if or how these cost-effectiveness models can capture the patient’s definition of value.
Patient perspectives on value can differ significantly from that of payers and even their providers. It is much more than cost effectiveness based on a national average. Value also varies greatly within patient populations. It evolves with the disease trajectory and stage of a patient’s life, and is highly dependent on individual responses to specific therapies.
Value assessment, from the patient’s perspective, includes whether the treatment permits the individual to fulfill personal goals, such as a woman with multiple sclerosis to live longer to see a grandchild grow up or a man with Parkinson’s who wants to keep his condition concealed for fear of discrimination at work. The patient community brings to the value discussion perspectives that have been informed by their life experiences, level of expertise about their condition, and many other factors.
The only way a value model can be of benefit to patients – the ultimate user of our health care system – is if people with chronic conditions are part of not only the model development process, but the value discussion in its entirety. Such action is particularly important if physicians and payers look to “value” to inform decisions that can affect the treatment options available to a patient.
To help engage the patient community in a meaningful way, the National Health Council – with input from a multi-stakeholder group including other patient organizations, payers, providers, and industry – developed a Patient-Centered Value Model Rubric.
The working group clearly identified at every stage of model development the opportunities and touch points for reaching out and involving patients, family caregivers, and patient advocacy organizations. They also agreed that any value model must, in additional to involving patients at every step of development, do the following:
- integrate outcomes that patients have identified as important and consistent with their goals, aspirations, and experiences;
- disclose to patients the value model’s assumptions and inputs in an understandable way and timely fashion;
- draw from a broad range of stakeholders, including the patient community;
- account for differences across patient subpopulations, trajectory of disease, and stage of a patient’s life; and
- rely on a variety of credible data sources that allow for timely incorporation of new information and account for the diversity of patient populations and patient-centered outcomes, especially those from real-world settings and reported by patients directly.
The creators of existing health care value models should be commended for bringing important attention to the issues of cost and value. Now the task at hand is to optimize their different approaches by capturing patient centeredness, such as by using the Patient-Centered Value Rubric. This tool can guide developers to ensure that the value discussion reflects the voice of the patient.
By establishing and utilizing direct, bidirectional, reciprocal, and continuous partnerships with the patient community, stakeholders can create value models that are meaningful to individuals and, in the end, to our broader health care system.
Marc Boutin is Chief Executive Officer of National Health Council.