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Open Access Highly Accessed Research article

Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

Anne Townsend12* and Susan M Cox3

Author Affiliations

1 Department of Occupational Science and Occupational Therapy, University of British Columbia, Wesbrook Mall, Vancouver, BC V6T 2B5, Canada

2 Milan Ilich Arthritis Research Centre, 5591 No. 3 Road, Richmond, BC V6X 2C7, Canada

3 W. Maurice Young Centre for Applied Ethics, School of Population and Public Health, University of British Columbia, 227-6356 Agricultural Rd, Vancouver, BC V6T 1Z2, Canada

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BMC Medical Ethics 2013, 14:40  doi:10.1186/1472-6939-14-40

Published: 12 October 2013

Abstract

Background

Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies.

Methods

This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7.

Results

A predominant theme to emerge was 'participation in health research to access health services.’ Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a “trial and error” process akin to research, which further blurred the boundaries between research and treatment.

Conclusions

Our findings have implications for recruitment, informed consent, and the dichotomizing of medical/health procedures as either research or treatment. Those with low health status may be more vulnerable to potential coercion, suggesting the need for a more cautious approach to obtaining consent. Our findings also indicate the need for boundary work in order to better differentiate treatment and research. It is important however to acknowledge a categorical ambiguity; it is not always the case that people are misinformed about the possible benefits of research procedures (i.e., therapeutic misconception); our participants were aware that the primary purpose of research is to gain new knowledge yet they also identified a range of actual health benefits arising from their participation.

Keywords:
Human subjects protection; Health research; Therapeutic misconception; Self-managing; Qualitative research; Accessing health services; Informed consent; Recruitment