When patient-centered outcomes research “is used well, it can be a powerful tool in making medical care better informed, without limiting patients’ and providers’ choices.”  That was the promise that I, and many others, held out with creation of the Patient-Centered Outcomes Research Institute (PCORI) in 2010.  Will PCORI achieve this goal? It is increasingly clear that evolving “value-based” payment models in health care, accelerated via the Affordable Care Act (ACA), will play a central role in how that question gets answered.

The movement to place greater financial risk on providers in an effort to pay for value rather than volume will have the effect of fundamentally changing the way health care providers interact with patients. But the question in value-based payment remains: value to whom?  The answer should be, of course, value to the patient. And the answer will be, intrinsically, shaped by application of evidence.

While I applaud efforts to improve and advance our health care system through payment and delivery reforms, I am also mindful that such value-based payment systems must be built upon the foundation of “patient-centeredness.” Indeed, lawmakers and policy experts have long agreed that a “patient-centered health care system” is the Holy Grail of bipartisan health care reform. Yet despite significant progress in advancing patient-centeredness in our health system, much more work remains to be done.

Personal Experience with Patient-Centered Care

It’s no accident that I’m passionate about patient-centered care.  My commitment springs from my personal journey of developing, being diagnosed with, and—many years later—receiving effective treatment for epilepsy. The same motivation to empower patients and bring the concerns of marginalized individuals into the health care policy arena is responsible for my decision to champion the Americans with Disabilities Act (ADA) as a Congressman from California.

My experiences as an advocate for patients and people with disabilities confirm my belief that patients’ voices need not only be heard, but also be acted upon. In my role as Chairman of the broad-based health care stakeholder group, the Partnership to Improve Patient Care (PIPC), where I’ve served since 2009, I have continued my mission to ensure that patient-centeredness become a priority for health care policymakers.

In some ways, this ought to be an easy assignment; many experts agree on the notion of developing a more “patient-centered health care system.” But as a practical matter, we do not yet have a health care delivery system that effectively views patients as equal partners and decision makers.  That’s why—as part of our ongoing commitment to promote patient-centeredness in health care—PIPC is offering up specific policy recommendations to translate principles of patient-centeredness into value-based payment, sometimes called “alternative” payment models (APMs).

A Value-Based Payment System

PIPC recently released a White Paper to examine the future of patient-centered care in the framework of a value-based payment system. In our paper, we have endeavored to identify the inflection points that we should expect to see in the future development of APMs—such as Accountable Care Organizations (ACOs), bundled payment systems, and patient-centered medical homes—while encouraging policy makers to maintain a focus on the patient perspective at every stage of their development.

We already know that engaged and active patients are more compliant with their treatment protocol because they are given a meaningful role in defining the care that is best for them. Engaged patients fill prescriptions and take them, they make appointments with rehab specialists, and they go in for their follow-ups. We also know that meaningful patient engagement requires that they trust in the system and their care providers, embrace the principles of shared decision-making, and recognize the benefits of being activated. Throughout this White Paper, we aim to illustrate how that trust and activation is built through patient-centered principles that are woven throughout the health care continuum.

Health care stakeholders—from patients, to providers, to innovators—understand that in order for value-based health care to succeed, it must follow the template set by PCORI and focus on the outcomes that matter to patients. For new payment models to achieve the goal of patient-centeredness, the pillars upon which they are built must be patient-centered as well – from the data infrastructure, to the research that builds the evidence base, to the decision aids and management tools that are used to apply that knowledge, to the quality measures against which they are evaluated.

Next Steps for Policymakers

To advance APMs that meet the principles of patient-centeredness—and therefore empower and activate patients in their own care—we suggest a number of common-sense steps. For example, as policymakers debate the future of APMs, they should have access to a dedicated stable of advisors who have a balanced understanding of the patient’s perspective. That’s why PIPC recommends the creation of an advisory panel on patient-centeredness to ensure that these principles are represented in the development of APMs.

Additionally, the Center for Medicare and Medicaid Innovation (CMMI)—the ACA-induced payment and delivery reform entity—should take appropriate steps to ensure that patient-centeredness, as a core element of quality improvement, remains a central goal of APMs and does not become secondary to cost control. We believe these goals go hand in hand.

To this end, CMMI should work closely with stakeholders to identify patient-centeredness criteria, and apply them to the new models it is testing in its demonstrations. APMs should not be incentivized to drive one-size-fits-all treatments—a familiar result of cost containment tools—which typically limit physician flexibility and preclude patients from having access to medical options best suited to their unique needs and preferences.

Moreover, it is essential that the measures being used in APMs to determine “quality” should account for outcomes that are actually meaningful to patients. Policies and interventions aimed at strengthening patients’ roles in managing their health care can contribute to improved outcomes – thus, factors such as patient activation should be measured as an element of high quality care. Quality improvement efforts that systematically work to expand the patient’s (and their family’s) ability to participate in care are a pathway toward improving outcomes. Patient-centered payment and delivery models should be able to demonstrate that they are making an effort to not just engage patients, but to empower and activate them to participate in their own care through effective shared decision-making tools.

Beyond the heated rhetoric over access, affordability and innovation in health care, there is lying before us an opportunity to design a new, patient-centered health care system; we must simply realize our capacity to achieve it. Congress started with defining a path to patient-centered outcomes research in PCORI, but the next step is to apply those same principles to how we deliver high-value, quality health care.

By integrating patient-centered principles throughout the building blocks of our health care system, we will build the capacity of APMs to deliver valuable, high-quality health care.  But if the fundamental components of the foundation lack patient-centeredness, inevitably, so will the health system upon which it is built.