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A. Chambers



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    OA16 - Improving the Quality of Lung Cancer Care - Patients Perspective (ID 399)

    • Event: WCLC 2016
    • Type: Oral Session
    • Track: Patient Support and Advocacy Groups
    • Presentations: 1
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      OA16.01 - The Role of Patient Groups in Integrating the Patient Voice into Drug Funding Decisions (ID 4291)

      16:00 - 17:30  |  Author(s): A. Chambers

      • Abstract
      • Presentation
      • Slides

      Background:
      The recent emergence of multiple new targeted therapies and immunotherapy drugs has significantly increased options in the systemic treatment of lung cancer (LC). While great news for patients, in the current environment of scarce health care resources, government agencies deliberating on public funding of cancer drugs struggle with ensuring sustainability of the public health system due to increasingly expensive drug costs. In Canada, the Pan-Canadian Oncology Drug Review (pCODR), a program of the Canadian Agency for Drugs and Technologies in Health (CADTH), provides recommendations that informs public funding decisions for cancer drugs. pCODR’s recommendations apply an evidence-based deliberative framework which considers the drugs clinical benefit, patient-based values, cost-effectiveness and adoption feasibility. As part of the pCODR review, patient input is integrated into the clinical and economic reports and recommendations. Patient groups, such as Lung Cancer Canada (LCC), can play a pivotal role by synthesizing the evidence gathered from patients and caregivers to inform the pCODR process.

      Methods:
      Both quantitative and qualitative techniques were used to gather data for LCC’s pCODR submissions. A national survey – the Faces of Lung Cancer (FOLC) - illustrated the perceptions and general unmet needs of those living with LC. Focus groups, one-on-one interviews and audits of patient discussion boards gathered the insights of patients and caregivers with experience on the drug under consideration. Patients were identified through LCC’s Medical Advisory Committee and their networks, clinical trial investigators, outreach to other patient groups and scans of LC patient/caregiver discussion boards.

      Results:
      Since 2014, LCC has made five pCODR submissions. 91 patients and 72 caregivers participated in the FOLC survey. The insights of an additional 62 patients and 38 caregivers with experience on the drugs under consideration were gathered qualitatively. LCC’s submissions describe the emotional, practical and logistical challenges of living with LC, and illustrate the “life impact” of the drug under consideration. - factors not traditionally included in clinical trial design.

      Conclusion:
      pCODR’s deliberative process, partnered with LCC’s methodology, may be an effective model to aid public funding discussions of new cancer drugs. pCODR and the reviewers have found patient group submissions valuable in providing lived-experience insight, at times changing perspectives. LCC’s contribution has been strongly reflected in the funding guidance reports. To supplement its process, pCODR recently launched a pilot project to include clinician input in the review process. The impact of the pilot will be assessed as data becomes available.

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