The role and contribution of volunteers in biomedical research

Morris, Norma (2017). The role and contribution of volunteers in biomedical research. [Data Collection]. Colchester, Essex: Economic and Social Research Council. 10.5255/UKDA-SN-850267

Data description (abstract)

Our research starts from the question: what does it mean to participate in research as a volunteer? What does it mean to the volunteer? to the researcher? and for the progress of the research? To investigate this, we are collaborating with medical physicists who are developing a radically new method of breast imaging (using light waves instead of X-rays or ultrasound) which has potential for the diagnosis of cancer. In agreement with our collaborators we have modified the normal clinical testing protocol to provide for a social scientist to be present as a participant-observer when tests are run on volunteer human subjects and to interview volunteers afterwards about their experience. The resulting qualitative data is fed back to the team, along with technical data from the tests, to guide future development. We propose to test hypotheses relating to volunteers' perceptions and expectations developed in a pilot study, to track their contribution in comparison to other influences on the evolution of the technology; and to improve understanding of how volunteers and researchers understand their roles and functions, and of the dynamics of the researcher-subject relationship.

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