PIPC has partnered with Xcenda to quantify the extent to which ICER incorporates stakeholder input in its final assessments, particularly patients.  Upon review of submitted comments, and comparing those comments to ICER’s final value assessments, Xcenda was able to quantify that patient perspectives were half as likely to be incorporated than other stakeholders. The report published today by PIPC bolsters their argument that ICER needs to take steps to improve not only its process for engagement, but also its consideration of input received from patients. 

Value assessment in general, and the use of cost-effectiveness in particular, is receiving renewed interest as a tool for controlling health care spending. Currently, the most common method for determining incremental cost-effectiveness of healthcare interventions is based on a calculation of quality-adjusted-life-years (QALYs). While the model has a basic appeal for making population-level decisions (by reducing patient populations to single, aggregate numeric values), it also poses several significant concerns from the vantage point of patient-centeredness and efforts to preserve access to needed care for individual patients and people with disabilities.  Of particular concern to me are the implications of use of QALYs for discrimination against people with disabilities, and its conflicting goals from the goals of personalized medicine.

​Value frameworks and similar value assessment tools are playing an increasingly prominent role in health care as insurance companies, Medicare, state agencies, and other stakeholders all are working rapidly toward "value-based" payment models. But will they pay for care that patients value? The Partnership to Improve Patient Care (PIPC) was founded on principles of patient-centeredness that cannot be achieved without engaging patients and people with disabilities. For the transition to a value-based health system to achieve outcomes that matter to patients, patients must have a seat at the table in defining value through the development of the value frameworks and tools.

Today, Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho sent a letter to the Department of Health and Human Services (HHS) expressing concerns with a proposed extension of Oregon's Medicaid Health Plan Extension.  Currently, Oregon has a unique waiver from “EPSDT” – a foundational principle of Medicaid that makes health care for children a national priority, and specifically requires coverage of “all medically necessary diagnostic and treatment services." The system underlying the Oregon Health Plan is a prioritized list of services, that uses quality-adjusted life-years (QALYs) to help rank treatments in order of importance.  High ranked treatments are funded; low ranked treatments are automatically denied regardless of medical necessity. 

The Partnership to Improve Patient Care (PIPC) and over 40 organizations representing patients, people with disabilities and providers submitted a letter to the Institute for Clinical and Economic Review (ICER) in response to their request for input on their value assessment process.  In the letter, the organizations stated, “Simply put, if we aren’t paying for care that patients’ value, we aren’t really paying for value-based care.”

The Partnership to Improve Patient Care (PIPC) has compiled a list of patient-centered resources that policymakers can and should be using to inform their development of public policy.  Groups representing patients and people with disabilities know the populations they serve better than anyone, and that patients and people with disabilities bring credible and insightful data to the table.  This list of the resources should be utilized by policymakers to inform the development and implementation of new payment models, quality measures and shared decision-making tools.  Moreover, this work should facilitate facilitate more direct engagement of patients and people with disabilities in policymaking. 
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This list of resources will continue to be updated as information is compiled. Click here to fill out the survey.

The Partnership to Improve Patient Care (PIPC) held a roundtable discussion on May 6, 2016 to discuss the challenges of value frameworks in determining patient access. For the past several years, there has been a shift to a health care system based on value, rather than volume. Amidst this shift, “value to whom” has been a consistent question, with payers, providers, patients and other stakeholders defining “value” from different vantage points. PIPC has continuously advocated that value should first and foremost be considered through the lens of patients and people with disabilities who are the ultimate beneficiaries of health care.​

The Partnership to Improve Patient Care (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.