Reflections on the opportunities and challenges of applying experience-based co-design (EBCD) to phase 1 clinical trials in oncology

Health Expect. 2024 Aug;27(4):e14068. doi: 10.1111/hex.14068.

Abstract

Background: Experience-Based Co-Design (EBCD) is a multi-stage participatory action research process which was developed originally to increase patient involvement in service improvement initiatives. This viewpoint article serves as a reflection on the researchers' experiences, focusing on the application and feasibility of participatory approaches, particularly co-design, in the specific context of early-phase clinical trials.

Methods: We reflect on the opportunities and challenges of applying EBCD in a new context of early-phase clinical trials in oncology where experimental treatments are increasingly perceived as a therapeutic option and, in certain instances, their efficacy may lead to accelerated approval facilitating a swifter integration into standard care.

Results: We propose that the opportunity of applying EBCD in such trials lies in improving the delivery of person-centered care, care coordination, and support during the transition from experimental to standard care. Three potential challenges when applying EBCD in early-phase clinical trials are discussed related to: the need for standardization in trial processes; planning EBCD in a context of high uncertainty; and vulnerability of patient populations.

Conclusion: Integrating EBCD into early-phase oncology trials presents an opportunity to enhance person-centered care and can lead to simultaneous improvements in care processes and therapeutic development.

Patient or public contribution: This article has been developed with the collaboration of a patient partner who serves on the advisory board of our ongoing EBCD study in early clinical trials.

Keywords: early‐phase clinical trial; experience‐based co‐design; oncology.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Clinical Trials, Phase I as Topic
  • Health Services Research
  • Humans
  • Medical Oncology*
  • Neoplasms / therapy
  • Patient Participation
  • Patient-Centered Care
  • Research Design*