From patient to participant: enhancing the validity and ethics of cancer research through participatory research

J Cancer Educ. 2013 Jun;28(2):237-46. doi: 10.1007/s13187-013-0464-2.

Abstract

Participatory health research involves a wide spectrum of participation from the population of study. We describe the participatory research processes of a large mixed method study on the psychosocial impact of dragon boating in individuals with breast cancer. In particular, we discuss the involvement of a Community Advisory Group (consisting of five breast cancer patients/survivors) in the development of the research study, data collection and analysis, and dissemination of the study results. We also outline the elements of a research workshop, in which 13 breast cancer patients/survivors were involved in the development of a provincial survey for the study. The purpose of this article is to share our experience of engaging cancer patients/survivors in a participatory research study. We discuss the value-based elements of participatory research (power sharing, voice and respect, reciprocity, and mutual benefit), and provide a case-based example of how these participatory elements were employed to potentially increase the validity of the survey instrument, to enhance the ethics of working with a cancer population, and ultimately contributed to a high survey response rate.

MeSH terms

  • Advisory Committees / ethics
  • Breast Neoplasms / psychology
  • Breast Neoplasms / rehabilitation*
  • Community-Based Participatory Research / ethics*
  • Cooperative Behavior*
  • Data Collection / ethics
  • Education / ethics
  • Ethics, Research*
  • Exercise / psychology
  • Female
  • Humans
  • Interdisciplinary Communication*
  • Interview, Psychological
  • Ontario
  • Patient Participation*
  • Patient Satisfaction
  • Pilot Projects
  • Psychometrics / statistics & numerical data
  • Quality of Life / psychology
  • Reproducibility of Results
  • Surveys and Questionnaires
  • Survivors / psychology
  • Translational Research, Biomedical / ethics*