The role and contribution of volunteers in biomedical research

DOI

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.

Semi-structured interviews with 37 female breast clinic patients and 9 healthy volunteers

Identifier
DOI https://doi.org/10.5255/UKDA-SN-850267
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=92d2c4fa8249caff715e68664859aacc7810fde64b05cd3c8325c50839967726
Provenance
Creator Morris, N, University College London
Publisher UK Data Service
Publication Year 2009
Funding Reference Economic and Social Research Council
Rights Norma Morris, University College London; The Data Collection is available for download to users registered with the UK Data Service.
OpenAccess true
Representation
Language English
Resource Type Numeric; Text
Discipline Social Sciences
Spatial Coverage United Kingdom