Background

Health insurance companies, Medicare, State agencies all are working rapidly toward "value-based" payment models. But will they pay for care that patients value? ​For the transition to a value-based health system to really achieve outcomes that matter to patients, patients must have a seat at the table not only in research, but in the translation of that knowledge into the fabric of our health care payment and delivery system. 

PIPC members recognize and appreciate the challenges that lie ahead as patients face one-size-fits-all decisions about their health in an attempt to achieve “value," in contrast to the real value achieved by personalized medicine and tailoring care to individual patients. We know that value means achieving outcomes that matter to patients and people with disabilities, and we stand ready to fight for new payment and delivery models to reflect their values.

​Write to Congress: Don't Let Medicare Get Between Patients and Doctors

PIPC strongly urges patients, people with disabilities, caregivers and providers to write letters to Congress to express concerns with CMS’ newly proposed payment model. We strongly support comparative effectiveness research as a tool for patients to better understand their treatment options and the impact on outcomes they care about so that they can make informed decisions with their providers. However, proposals that set national coverage policies based on bureaucratic determinations of average value pose a grave risk to patients, and especially people with disabilities who are most disadvantaged by average value assessments. 

​Poll: Americans Oppose Government Determining Value

In a recent survey of nearly 2,000 registered voters polled by Morning Consult, 8 in 10 say that doctors and patients should be able to decide the best course of treatment without government interference and that Medicare reforms should move toward patient-centered health care by giving physicians and patients the support they need to choose the best care for them.

​This survey follows the Centers for Medicare & Medicaid Services’ (CMS) recently proposed new Part B Drug Payment Model, calling for government-determined centralized value determinations based upon comparative effectiveness and cost-effectiveness analyses. Consistent with the poll’s findings, PIPC is strongly opposed to putting CMS in the position of deciding value on behalf of patients, which would create substantial new barriers to patient access, and undermine the movement toward patient-centered healthcare.

'Patient Voices’ on Value Frameworks

In response to CMS’ recently proposed Medicare Part B drug demonstration, dozens of individual patients and patient advocacy groups have mobilized to voice their concerns with the model’s use of "comparative effectiveness" research and "cost-effectiveness" data to make coverage decisions. Indeed, patients have expressed a wide range of concerns – from the reliance on assessments such as those generated by the Institute for Clinical and Economic Review (ICER), to the lack of patient engagement in the development of the new reimbursement model. 

​Instead, patients consistently argue that 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.

Patient-Centered Healthcare Resources

PIPC is working to advance President Obama’s vision for personalized and precision medicine by gathering, organizing and sharing links to a variety of patient-centered resources offered by leading patient groups. These patient resources are intended to inform the development and implementation of new payment models, quality measures and shared decision-making tools.  Hopefully, making patient resources accessible will facilitate more direct engagement of patients and people with disabilities. It is our hope that this information helps all health care stakeholders identify resources for their work to advance patient-centeredness in health care.

​PIPC Comments on Part B Demonstration

​PIPC, the American Association of People with Disabilities (AAPD), and over 80 other patient advocacy organizations have sent a formal comment letter urging CMS not to move forward with their proposed Part B Drug Payment Model. Instead, we hope to continue working with the agency and other stakeholders to ensure that, as it seeks to advance value-based health care, it is supporting care valued by patients and people with disabilities. 

PIPC Roundtable: Assessing Value to the Patient

PIPC convened a roundtable last May, because we are very concerned that payers, physicians and policymakers are increasingly using value frameworks in the private sector – and potentially in the public sector – to determine patient access. Many emerging value frameworks are driven by payers, represent the ideals of payers, and are therefore representative of their goal to reduce costs. Although labeled as “value frameworks,” many of these frameworks do not accurately capture what patients value. In fact, they often are in conflict with stakeholder efforts to move towards a more patient-centric health care system and advance access to personalized and precision medicine.