In a letter to the Institute for Clinical and Economic Review (ICER), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on ICER's draft evidence report on treatments for Duchenne Muscular Dystrophy (DMD). Chairman Coelho offered criticism of ICER’s model for oversimplifying the disease, noting that ICER continues to overlook outcomes that matter to patients and caregivers. He also pointed out that ICER continues to use the flawed and discriminatory quality-adjusted-life-year (QALY) metric in its review. “ICER continues to overlook outcomes that matter to patients, families and caregivers in their haste to provide reports to payers,” wrote Chairman Coelho. “We encourage ICER to be more strategic and focus on producing complete and thoughtful analysis using high quality data incorporating a range of outcomes important to patients instead of rushing to complete reports that do not have appropriate scientific rigor."

​In a letter to the Institute for Clinical Economic Review (ICER), over 30 patient and disability groups joined the Partnership to Improve Patient Care (PIPC) in outlining concerns about ICER’s 2020 Value Assessment Framework. The letter calls on ICER to abandon its use of the quality-adjusted-life-years (QALY) metric, as well as other metrics that discriminate against patients and people with disabilities. PIPC also emphasized that ICER must develop novel measures of value to account for patient differences and priorities, as well as models that are open-source, transparent, and available to all patients and researchers. “Above all, we urge ICER to put patients and people with disabilities at the center of all of your assessments,” the letter states. “While we share your interest in lowering healthcare spending and addressing affordability, we do not believe that generating value assessments in a manner that leads to restricted access and discrimination is a necessary tactic or ethical strategy for achieving these goals.”

The Partnership to Improve Patient Care (PIPC) joined over 40 patient advocacy groups in signing onto the Alliance for Aging Research's comment letter to the Centers for Medicare and Medicaid Services (CMS) on the agency's proposed interoperability and patient access rule. While the letter commends CMS for acknowledging the importance of providers and patients being engaged in shared decision-making, advocates remain concerned that shared decision-making remains an unsupported and undefined concept within the agency. "To truly empower patients to 'effectively manage their own health, care, and costs'  will require the agency to prioritize implementation of the National Quality Partners Playbook: Shared Decision-Making in Healthcare (Playbook)," the letter states. "Moving forward, we hope that CMS will work with our organizations to advance shared decision-making fundamentals for healthcare organizations, establish a measurement framework for shared decision-making, and then implement the ‘Drivers of Change’ outlined by the Playbook."