The Institute for Clinical and Economic Review (ICER) functions as an independent nonprofit organisation that conducts health technology assessment (HTA) in the United States (US) and produces non-binding recommendations for decisions related to drug pricing and insurance coverage. As of 2023, ICER has updated its Patient Engagement Program to include onboarding of patient community partners, a wide range of verbal and written opportunities to provide input, patient expert review of the ICER report, participation at the public meeting, and patient-facing resources and summaries to guide participation and to convey impact of community involvement. Three specific case studies will feature the impact on HTA from patient community involvement in ICER’s drug reviews for lupus nephritis (2021), haemophilia (2022), and metachromatic leukodystrophy (2023). These case studies reveal how patient-reported outcomes, input on lived experiences, and patient community feedback can shape the HTA deliberations, conclusions, and recommendations. In addition, the creation of ICER’s Patient Council in 2023 to advise ICER on its patient engagement strategy provides a new mechanism through which communication to patient organisations is enhanced, community outreach is diversified, and impact of involvement is better conveyed. The Patient Council in its advisory role allows for the continued improvement and evolution of ICER’s Patient Engagement Program.

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USA: Patient Involvement at the Institute for Clinical and Economic Review

  • Catherine K. Fischer,
  • Kathleen A. Arntsen,
  • Mark W. Skinner,
  • Maria J. Kefalas,
  • Tiffany A. Westrich-Robertson

摘要

The Institute for Clinical and Economic Review (ICER) functions as an independent nonprofit organisation that conducts health technology assessment (HTA) in the United States (US) and produces non-binding recommendations for decisions related to drug pricing and insurance coverage. As of 2023, ICER has updated its Patient Engagement Program to include onboarding of patient community partners, a wide range of verbal and written opportunities to provide input, patient expert review of the ICER report, participation at the public meeting, and patient-facing resources and summaries to guide participation and to convey impact of community involvement. Three specific case studies will feature the impact on HTA from patient community involvement in ICER’s drug reviews for lupus nephritis (2021), haemophilia (2022), and metachromatic leukodystrophy (2023). These case studies reveal how patient-reported outcomes, input on lived experiences, and patient community feedback can shape the HTA deliberations, conclusions, and recommendations. In addition, the creation of ICER’s Patient Council in 2023 to advise ICER on its patient engagement strategy provides a new mechanism through which communication to patient organisations is enhanced, community outreach is diversified, and impact of involvement is better conveyed. The Patient Council in its advisory role allows for the continued improvement and evolution of ICER’s Patient Engagement Program.