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From Patient to Participant: Enhancing the Validity and Ethics of Cancer Research through Participatory Research

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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.

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Correspondence to Connie G. Chiu.

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Chiu, C.G., Mitchell, T.L. & Fitch, M.I. From Patient to Participant: Enhancing the Validity and Ethics of Cancer Research through Participatory Research. J Canc Educ 28, 237–246 (2013). https://doi.org/10.1007/s13187-013-0464-2

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