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.

Survivorship care for postmenopausal breast cancer patients in Ireland: What do women want ?

“…By consulting women using a participatory approach, we have highlighted what they view as their priority needs in survivorship care planning. This participatory approach was a mutually positive experience, reflecting the experiences of other researchers who have worked with cancer survivors to increase the relevance of study findings to the population under study (Chiu et al, 2013).…”

Current trends in patient and public involvement in cancer research: A systematic review

“…The UK represents the majority of the publications (n = 12), followed by the United States (n = 7) and Australia (n = 3) . A single study represents several countries (Germany, Iceland, Italy, Japan, Spain, the UK), and the remaining studies report findings from other countries: Sweden, Denmark, the Netherlands and Canada …”

“…The populations in the studies were defined in various ways, though most were disease‐specific, while other populations were defined according to age or ethnicity. The majority of the studies (n = 13) focused on specific cancer diseases: breast cancer (n = 4), including a study specifically focusing on breast cancer in a Latino population, followed by lung cancer (n = 4), blood cancer (n = 2), colorectal cancer (n = 1), gynaecological cancer (n = 1) and bowel cancer (and other bowel diseases) (n = 1) . Some studies (n = 8) represented heterogeneous cancer types with no specific population/disease focus .…”

Empowering <i>Promotores de Salud</i> as Partners in Cancer Education and Research in Rural Southwest Kansas

“…Building community infrastructure to enhance participation in cancer research is critical, particularly in vulnerable ethnic minority and rural communities that typically face the additional burden of geographic isolation (Chiu, Mitchell, & Fitch, 2013; Schensul & Trickett, 2009). Interventions that use multi-level networking and capacity-building strategies have effectively engaged Latino communities in cancer research.…”