Today, the Partnership to Improve Patient Care (PIPC) released a public opinion poll by Morning Consult regarding the use of cost-effectiveness assessments to determine value of coverage and treatment costs. The survey demonstrates that voters resoundingly reject the main tenets of cost-effectiveness analyses with 82 percent of American voters objecting to their use in determining health care coverage and reimbursement decisions. These types of measures, which are often used outside of the U.S. to limit patient access to medicines, have been frequently criticized as discriminatory by patients and persons with disabilities. Increasingly, policymakers and payers have proposed to use these same tools to limit coverage for Medicare and Medicaid beneficiaries.  

​The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to establish priorities and set an agenda for the conduct of comparative clinical effectiveness research (CER). Its Board of Governors is selected by the Government Accountability Office (GAO), and includes three designated seats for representatives of patients and consumers.  GAO concluded in a March 2018 report that PCORI is fulfilling its Congressional mandate to generate evidence that patients and those who care for them can use to make better-informed healthcare decisions. Following the National Academy of Medicine's definition of CER, PCORI invested nearly $2.4 billion in more than 600 patient-centered CER studies and related projects that support CER to date. PCORI’s Methodology Committee, also appointed by the GAO, provides guidance to the PCORI Board of Governors and its contract researchers about the appropriate use of CER methods, methodological standards, as well as establishing priorities to address gaps in research methods or their application.

I’m the mother of a wonderful girl named Shannon, who has a rare genetic condition called Phelan-McDermid syndrome. For years I steered clear of research information about her condition and focused on the daily challenges of meeting her needs. It never occurred to me that beyond being Shannon’s mom and caregiver I would play another vital role – as part of the research community helping her and others like her live a better life. 

Hon. Tony Coelho
PIPC Chairman, Patient Advocate

What's the most important question facing any patient with a life-threatening illness?
​
"Which treatment option is best for me?"

By most accounts, this is a good problem to have; giving patients a range of treatment options, and the ability to make an informed choice about the regimen that most directly aligns with their personal health priorities is fundamental to high-quality, individualized health care. But along with these new methods for treatment come difficult questions. Do I want the more aggressive or conservative therapy? Is my quality of life during treatment more important than returning to work quickly? Which course of action has more tolerable side effects? Can I afford the care I need?

What's the most important question facing any patient with a life-threatening illness?
​
"Which treatment option is best for me?"

By most accounts, this is a good problem to have; giving patients a range of treatment options, and the ability to make an informed choice about the regimen that most directly aligns with their personal health priorities is fundamental to high-quality, individualized health care. But along with these new methods for treatment come difficult questions. Do I want the more aggressive or conservative therapy? Is my quality of life during treatment more important than returning to work quickly? Which course of action has more tolerable side effects? Can I afford the care I need?