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Advocacy and Patient Involvement in Clinical Trials

In: Principles and Practice of Clinical Trials

Author

Listed:
  • Ellen Sigal

    (Friends of Cancer Research)

  • Mark Stewart

    (Friends of Cancer Research)

  • Diana Merino

    (Friends of Cancer Research)

Abstract

Patient engagement in research and clinical trials has evolved over time. Patients are no longer simply passive research subjects but are increasingly being integrated into research teams and protocol review teams to help design, implement, and disseminate clinical trial findings. While potential barriers exist for meaningful patient engagement, mechanisms and methods to effectively engage patients and advocacy groups are evolving, and resources and best practices are continually being developed to assist researchers and patients. Additionally, legislation and regulatory guidance are being instituted to promote patient engagement and ensure it is a routine process for clinical trial development. Developing patient-centered clinical trial designs has led to development of innovative clinical trial infrastructures and statistical methods. Patient advocates and organizations are also increasingly developing their own data sources and clinical trials, which represent unique opportunities for researchers to partner with patient groups to rapidly advance drug development.

Suggested Citation

  • Ellen Sigal & Mark Stewart & Diana Merino, 2022. "Advocacy and Patient Involvement in Clinical Trials," Springer Books, in: Steven Piantadosi & Curtis L. Meinert (ed.), Principles and Practice of Clinical Trials, chapter 30, pages 569-581, Springer.
    • Handle: RePEc:spr:sprchp:978-3-319-52636-2_57
    DOI: 10.1007/978-3-319-52636-2_57
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