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  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Action Center
    • Value Our Health
    • International
    • Where We Stand
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    • Engaging Patients in Value-Based Payment
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    • The Data Mine
  • Events
    • Nevada AB 259
    • QALY Panel
    • QALY Briefing
    • Past Webinars >
      • MFN/IPI Webinar 2025
      • Discrimination & Health Care
      • C & GT Webinar
      • ICER COVID Webinar
      • Value Our Health Briefing
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
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Resource Center

PIPC White Paper: Targeted Literature Review on Patient-Centered Cost Outcomes

11/16/2020

 
Picture

​In September 2020, the Board of Governors for the Patient-Centered Outcomes Research Institute (PCORI) approved the proposed Principles for the Consideration of the Full Range of Outcomes Data for public comment. The goal of these principles is to outline PCORI’s compliance with its reauthorization legislation, which states that, in addition to clinical outcomes, research should also endeavor to capture patient-important outcomes that assess the economic burden of treatments and services. 
Read White Paper
While PCORI remains prohibited from conducting cost-effectiveness analyses or other analyses that assess the value of a life in relation to an individual’s disability (eg, dollars per quality-adjusted life-year), the additional focus on cost outcomes that matter to patients moves towards addressing a gap in value assessment.

While clinical effectiveness is still the priority, cost outcomes from the patient perspective are a reality that sometimes gets left behind. Patients struggle with affordability, travels costs associated with treatment, caregiver resources, etc. It is important to understand the existing evidence about which economic burden outcomes matter most to patients, as well as where PCORI may need to conduct additional research to fill in gaps. PCORI will need to better understand the landscape to ensure that research going forward captures accurate and actionable information about the economic burden of treatments from the patient perspective and how this information may be used to drive patient decision making when combined with the results of PCORI’s comparative-clinical effectiveness research. 

In this new white paper, Xcenda conducted a targeted literature review in September 2020 to better understand how patient-important cost outcomes were considered in studies.

Key findings include:
  • Patient preferences of economic burden outcomes are understudied in the literature
  • Economic burden outcomes are often excluded from preference studies, and when they are reported, they are often assessed using a single catchall “cost” outcome
  • More patient preference research is necessary to consider the full range of outcomes important to patients, including those that take affordability and economic impact into consideration
  • Patients may prioritize economic burden outcomes differently based on a variety of factors, and their economic outcome preferences may factor into their treatment decisions
  • Although treatment effectiveness and safety are major drivers behind treatment selection, economic burden also plays a major role in the decision-making process

Further research by PCORI may help to fill some of these evidence gaps and facilitate more informed healthcare treatment decision making.
pipc_patient_cost_issue_brief_nov_20_xd.pdf
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