Policymakers Should Choose Patient Empowerment Over Paternalism

Over the last few years, I've been very outspoken on the need to engage patients and people with disabilities in efforts to define the value of health care. Engagement has become my ministry because, frankly, what we often find is "token" engagement - a pat on the head, with no real impact on policy development and implementation. I thought we were making real progress on engagement in this administration. It seems I was wrong.

Patients and people with disabilities have consistently and strongly opposed misuse of comparative effectiveness research (CER) and cost effectiveness in government policies that drive beneficiaries to one-size-fits-all treatments. We've communicated our position to policymakers on strategies to build a patient-centered health system. Patient stakeholders have made their views clear as participants on advisory panels, in formal regulatory comments, in letters, and in policy recommendations. We have provided consensus recommendations from patients and people with disabilities on policy solutions that would build on the Affordable Care Act's (ACA) provisions to fund patient-centered outcomes research and to authorize a shared decision-making program. And in response, we've gotten a pat on the head.

Instead of taking the views of patients and people with disabilities seriously, the Centers for Medicare and Medicaid Services (CMS) recently proposed to set national policy based on assessments such as those generated by the Institute for Clinical and Economic Review (ICER). I have written in the past that ICER relies on quality-adjusted-life-years or QALYs in determining the "value" of treatments - a policy long opposed by patients and people with disabilities due to its significant implications for access to care.

Reliance on average value assessments is not a policy that drives "value for the patient," as CMS indicates in the proposed rule - it is a policy intended to contain short-term costs by limiting choices for patients. Yet, the result is a less effective and efficient system of care. A truly cost-effective system of care would include tools to inform patients and people with disabilities about their treatment options, and their impacts on outcomes that matter to them - because patients and people with disabilities will adhere to treatment protocols when they are actively engaged and are less likely to encounter significant (and expensive) adverse events as a result.

CMS officials acknowledge that many of these proposed tools need further development and patient input. But what about the input we have provided over and over again in the past opposing reliance on average value assessments? What happened to the path of individualized care and shared decision-making in the ACA? Nonetheless, CMS intends for its Innovation office to implement the proposed policies in January 2017, leaving a deficit of time for patient advocates and other leading stakeholders to brace themselves for the realm of rationed care.

And it's not just Medicare beneficiaries and the disability community who are concerned about Medicare moving toward a system of rationing care. In fact, according a recent poll released by the Partnership to Improve Patient Care (PIPC)--an organization which I've led since 2008--a vast majority of Americans, about 80 percent, say that doctors and patients should be able to decide the best course of treatment without government interference. And 9 in 10 people agree that health care decisions should be made between doctors and patients.

It is my hope that Congress steps in to say enough is enough. This new proposal contradicts the ACA's provisions that protect patients from use of QALYS as a determination of value - both in patient-centered outcomes research, and as a means to limit Medicare coverage. Congress should instead call on CMS to develop the patient-centeredness criteria authorized by statute to determine the impact of alternative payment models on patients and people with disabilities. Without those criteria, they don't even have a benchmark for determining value to the patient.

We should not be taking this leap backward in the patient-centeredness movement by embracing paternalism over empowerment of patients and people with disabilities. Call on CMS to start over and prioritize building an infrastructure for engagement of patients and people with disabilities so that we are truly advancing policies that balance progress toward a patient-centered health system and overall health costs.