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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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Authors and Affiliations

  1. Surgical Oncology, John Wayne Cancer Institute, 2200 Santa Monica Boulevard, Santa Monica, CA, 90404, USA

    Connie G. Chiu

  2. Department of Psychology, Wilfrid Laurier University, 75 University Avenue West, ON, Waterloo, N2L 3C5, Canada

    Terry L. Mitchell

  3. Odette Cancer Centre, Sunnybrook Health Sciences Centre, 2075 Bayview Ave., Room T2 234, ON, Toronto, M4N 3M5, Canada

    Margaret I. Fitch

Authors
  1. Connie G. Chiu
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  2. Terry L. Mitchell
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  3. Margaret I. Fitch
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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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