Given the emphasis being placed on the “value of care” — who defines “value,” how the “value” of individual patient care is being judged and applied and how this assessment could deny access to treatments or services — is what motivated Lung Cancer Alliance and more than 60 groups representing patients and people served by health systems, to write an open letter to state that “value” should first and foremost be considered through the eyes of patients and people with disabilities — who are the ultimate beneficiaries of health care.
Every one of us has individual needs, unique characteristics and personal preferences that factor into our health care decisions. We do not fit neatly into one-size-fits-all models and assessments that can drive certain clinical decisions on benefits, cost and effectiveness of treatments. That is why we must have a meaningful role in the discussion of value as only we can offer real world input on what matters to us when faced with medical decisions that impact our quality of life. This, in turn, will help to better structure a more personalized, people-centered health care system that works to match — the right medicine and care — to the right people — at the right time.
Fortunately, the pendulum is swinging in that direction for the lung cancer community which has long carried the burden of a deeply held stigma against the number one cancer killer. This status quo has contributed to an anemic pace and scope of compassion, support, research advancements and low survival rates. We are witnessing the most exciting scientific progress and groundbreaking developments ever seen in the field highlighted by new precision-based therapies that are increasing survival rates and bringing improvements to quality of life during treatment for so many impacted by this disease.
These individualized experiences and patient-centered data collected on these events over time will be the key to informing how to better target the use of these drugs and how to guide research strategies to bring even greater advances in outcomes for people impacted by lung cancer.
This is the type of cost-effective and value-based system we should strive for — one based first and foremost on patient engagement — and second, is responsive to individual patient preferences, needs and values in the connections of their own social world.
Any artificial and misapplied assessments and inferences of “value” at this juncture that are not people-centered would slow this momentum, disadvantage our patient community and negatively impact survivorship.
We will tell you what we “value” — please don’t forget to ask.
Laurie Fenton Ambrose is president and CEO of the Lung Cancer Alliance.