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Carolyn Aldige



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    MS 04 - Joint IASLC/GLCC Session Current Issues in Lung Cancer Advocacy (ID 526)

    • Event: WCLC 2017
    • Type: Mini Symposium
    • Track: Patient Advocacy
    • Presentations: 1
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      MS 04.02 - Lung Cancer Advocates and Measuring Value in Healthcare (ID 7654)

      11:15 - 11:30  |  Presenting Author(s): Carolyn Aldige

      • Abstract
      • Presentation
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      Abstract:
      The United States has no formal system of health technology assessment, compared to, for example, the system in the United Kingdom and many countries worldwide. In the U.S., certain federal agencies review and recommend approval of drugs and devices, while others make determinations regarding reimbursement of costs of treatment and other interventions. With the cost of health care in the U.S. skyrocketing in the absence of cost controls, many organizations, e.g., the American Society of Clinical Oncology, the National Comprehensive Cancer Network, Memorial Sloan Kettering Cancer Center and others, have developed “value frameworks”. In virtually all cases, however, the frameworks were developed without input from patients, their caregivers or patient advocates. They were developed from evidence obtained in randomized controlled trials and did not include real-world evidence, such as from observational studies or patient experience reports. Decisions about what patients value were often made by clinicians and economists and not by the patients whose lives would be impacted by the recommendations.The situation becomes even more complex when one considers that all patients do not share the same values with regard to outcomes. While a younger, otherwise healthy patient might accept significant treatment toxicity in order to extend life, an older, less healthy patient might choose treatment that is likely to be less toxic. As treatment costs escalate, financial toxicity is also a consideration and varies among individual patients. A treatment that imposes significantfinancial burden on one individual might not be perceived as overly costly by another.Family/caregiver preference also needs to be taken into consideration, as all demographic groups do not share the same preferences or values. Whereas in some groups, the patient’s preference is what counts, in others, family members are much more involved in decision making.In May 2015, researchers from the American Institutes for Research and the Mayo Clinic published a study based on extensive interviews with 721 patients.

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