Toward a patient-centered approach: incorporating principles of participatory action research into clinical studies

Abstract

Despite the shift to patient-centered care in recent years, many clinical studies continue to reinforce the traditional researcher/subject relationship. In contrast, action research engages study participants in a collaborative relationship with researchers.

Objectives: To review the benefits of adding a participatory component to an existing study with respect to (1) engaging participants in the research process to clarify and validate qualitative findings, (2) engaging participants in the change process to develop potential solutions for improving integrative cancer services, and (3) giving voice to the concerns of patients using complementary and alternative medicine.

Method: Focus groups were used to clarify concepts arising from patient interviews and to provide a forum for participants to develop recommendations and facilitate dissemination.

Conclusion: Our approach empowered patients by involving them in the research and in developing solutions for how health care providers, policy makers, and researchers can enhance an integrative approach to cancer care.