​In a comment letter to the Institute for Clinical and Economic Review (ICER), the Partnership to Improve Patient Care (PIPC) offered feedback on ICER’s draft evidence report for rheumatoid arthritis. PIPC Chairman Tony Coelho strongly encouraged ICER to address the shortcomings of its RA report, specifically criticizing the lack of patient input and use of Quality Adjusted Life Years (QALY)-based methods. He also pointed out that ICER continues to prioritize randomized clinical trial data over real world evidence (RWE), despite the existence of strong RWE on rheumatoid arthritis. “Given the severity of the disease, and the large patient population, we urge you to evaluate these treatments with the perspectives of patients at the center and using methodologies that will improve, not inhibit, the ability of patients to access treatments that they need.” wrote Chairman Coelho.

In a letter to Senators working to advance reauthorization of the Patient Centered Outcomes Research Institute (PCORI), Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho provided feedback on a recent discussion draft of PCORI reauthorization. Chairman Coelho emphasized that this is a “crucial” time for Congress to build on the success of PCORI, noting that PIPC supports efforts to ensure that PCORI research is timely and responsive to the needs of those making decisions about new drugs and other treatment options. In addition to a fully funded reauthorization of PCORI for ten years, and Chairman Coelho offered suggestions pertaining to: (1) board composition; (2) methodology committee selection; (3) outcomes data; (4) high-impact research; and (5) enhancing statutes that protect PCORI’s patient-centered mission. “Now more than ever, we need solutions that are both evidence-based and patient-centered,” wrote Chairman Coelho. “The next 10 years of PCORI will be essential as the institute focuses on dissemination and implementation of its work."

On Friday, Oct. 18, the Partnership to Improve Patient Care joined over 50 leading patient advocacy groups in submitting a joint comment letter to the Institute for Clinical and Economic Review (ICER) on its draft 2020 Value Assessment Framework. The letter criticized ICER for defending its use of the QALY, saying that ICER’s framework ignores ethical principles that enjoy broad support among the general public. Instead of relying on metrics that treat patients as averages, the letter encouraged ICER to abandon it’s use of discriminatory value metrics and develop mechanisms that incorporate robust patient and clinician feedback. “Above all, we urge ICER to put patients and people with disabilities at the center of all of your assessments,” the letter states. “ICER’s value assessments do not promote affordability for patients, but instead give payers justification to create barriers to treatment coverage that benefit their own bottom line.”

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 for Type 2 Diabetes Treatments. Chairman Coelho criticized ICER for omitting quality of life data deemed valuable by patients, pointing out that the institute continues to rely on faulty data in its assessments. The letter also condemns ICER for ignoring the heterogeneity of Type 2 Diabetes Patients in its report.  “ICER continues to use a flawed methodology, ignoring the reality of heterogeneous patient populations and quality of life outcomes that matter to patients in favor of data that easily crosswalks into the discriminatory QALY metric,” wrote Chairman Coelho. “We urge ICER to consider alternative methodologies that will foster improved health care decisions for individual patients.”

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 Cardiovascular disease (CVD). Chairman Coelho argued that there are several key flaws with ICER's report, noting that their model uses inappropriate data for the population being targeted with CVD medications. He also criticized ICER for using an "artificially narrow" definition of a major adverse cardiovascular event. "ICER continues to use a flawed methodology, ignoring real-world data and quality of life outcomes that matter to patients in favor of data that easily crosswalks into the discriminatory QALY metric," wrote Chairman Coelho. "We urge ICER to reconsider both its data sources and its concerning theory that health care must be rationed to achieve savings and efficiency in our health care system." 

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."

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 peanut allergy. Chairman Coelho was critical of ICER for overlooking patient input and preferences in favor of the discriminatory quality-adjusted-life-years (QALY) metric, noting that the use of the QALY does not help patients with peanut allergies and their caregivers mitigate burden. He also noted that ICER's model does not account for the complexities of peanut allergy conditions. "ICER continues to use one-size-fits-all models and limited data that do not capture the complexities of different patient populations in their assessments of innovative medical products," wrote Chairman Coelho. "PIPC echoes the Asthma and Allergy Network, the Asthma and Allergy Foundation of America, and other patient advocacy groups that have implored ICER to acknowledge that patients are unique individuals with different preferences who respond differently to treatments."