title: From patient to participant: enhancing the validity and ethics of cancer research through participatory research.
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.
authors.affiliation: Surgical Oncology, John Wayne Cancer Institute, 2200 Santa Monica Boulevard, Santa Monica, CA, 90404, USA. chiuc@jwci.org
authors.forename: Connie G
authors.initials: CG
authors.lastname: Chiu
authors.forename: Terry L
authors.initials: TL
authors.lastname: Mitchell
authors.forename: Margaret I
authors.initials: MI
authors.lastname: Fitch
mesh_terms: D026683:Advisory Committees / Q000941:ethics; D001943:Breast Neoplasms / Q000523:psychology / Q000534:rehabilitation*; D055812:Community-Based Participatory Research / Q000941:ethics*; D003299:Cooperative Behavior; D003625:Data Collection / Q000941:ethics; D004493:Education / Q000941:ethics; D032984:Ethics, Research; D015444:Exercise / Q000523:psychology; D005260:Female; D006801:Humans; D033183:Interdisciplinary Communication; D007406:Interview, Psychological; D009864:Ontario; D010358:Patient Participation; D017060:Patient Satisfaction; D010865:Pilot Projects; D011594:Psychometrics / Q000706:statistics & numerical data; D011788:Quality of Life / Q000523:psychology; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology; D057170:Translational Research, Biomedical / Q000941:ethics*