“Nothing about us without us.”
This mantra – popularized by disability rights groups in the early 1980s, and adopted since by patient advocates across the spectrum – manifests a call for patient engagement in all facets of healthcare policymaking.
I, along with many other advocates, have expressed concern in recent months as we’ve witnessed Congress propose wide-ranging reforms to the healthcare system with little input from the people the system is intended to serve. Regardless of the future of the Affordable Care Act, however, the shift towards “value” in driving healthcare decisions will continue unabated. Patients must be at the center of value-based decisions, or they will again be left at the margins.
I will not shy from voicing concern when I think policymakers (Republican or Democrat) are leaving out the patient – but I will also give credit where it is due. While a tremendous amount of work remains to be done, policymakers took two steps recently that show progress is possible. One was approval by the Senate Finance Committee of the CHRONIC Care Act, a bipartisan bill (yes, they still exist!) whose success is attributable to significant stakeholder engagement and that, if enacted, will help to meet real patient needs.
We’ve also cheered regulators’ increasing responsiveness to the needs of patients. For example, the Department of Health and Human Services (HHS) recently signaled a small but important step in the right direction when they announced the creation of a patient ombudsman to help promote patient perspectives in Medicare’s shift towards alternative payment models (APMs). The new Alternative Payment Models Beneficiary Ombudsman will play an essential role in helping Medicare beneficiaries understand and navigate new “value-based” payment models developed through the Center for Medicare and Medicaid Innovation (CMMI).
While each of these respective developments are important – and should be applauded by the patient community – they represent only pieces of the systematic reforms that should be advanced to ensure that the definition of “value” in Medicare prioritizes providing “value” to the patient. This principle is particularly important as policymakers move quickly to develop policies that are fundamentally changing how “value” is defined.
With that in mind, there are several concrete steps policymakers could take to ensure that the patient remains at the center of value-based care. For example, Congress or the new leadership at HHS should act to create an infrastructure for patient engagement within CMMI to help ensure new payment models are aligned with care that patients value. Patients could provide guidance to the Innovation Center in identifying key areas that would benefit from patient input, including APM development, model design features that will promote effective patient engagement, and metrics by which to assess the success of these efforts.
Further, to maintain accountability, CMMI should note where they have incorporated stakeholder feedback when finalizing demonstration programs, and be required to provide a rationale for instances in which stakeholder feedback has not been incorporated. Also, rulemaking and public comment opportunities should include information about how a proposal is incentivizing high-quality patient-centered care. This will help to give patients and other stakeholders an opportunity to shape CMMI’s work. Generally speaking, the agency could also benefit from greater patient input as part of its quality measures plan and the development of measures that focus on health outcomes that matter to patients with chronic disease.
Our diseases, conditions, and disabilities may differ. We each may have distinct treatment preferences, risk profiles, genetic predispositions, and priorities for recovery. Yet we share the goal of getting care that is tailored to our individual characteristics, needs, and preferred outcomes.
Regardless of what happens in Washington, health care will continue shifting to pay for care based on value. But will it pay for care that we, as patients and people with disabilities, value? Only if we make our voices heard.