This project, “Translations and transformations in patienthood: cancer in the post-genomics era”, is a five-year research programme (2015-2020), funded by a Wellcome Trust Senior Investigator Award in Society and Ethics. It is a collaboration between the Universities of Leeds and Edinburgh, with the funding awarded to Professor Anne Kerr (School of Sociology and Social Policy, Leeds) and Professor Sarah Cunningham-Burley (Centre for Population Health Sciences, Edinburgh). The research aims to examine the transformations in cancer patienthood in the post-genomics era, and will be located at the intersections of science and technology studies, medical sociology, and interdisciplinary bioethics.
Developments in understanding and treating cancers are at the forefront of the post-genomic revolution. Scientific understanding of cancer has developed rapidly since the mapping of the human genome at the turn of the century, bringing novel treatments, such as stratified/personalised medicine, earlier diagnosis and screening programmes. Alongside this, clinical practice is also rapidly developing in the context of stratified medicine, genomic sequencing, and data-sharing, which will impact on patients and their experience and understanding of cancer and its treatment in novel ways. Our understanding of patient experience has not kept pace with these developments in genomics. We know little about how genomics research and data, and their translational journeys, are reshaping what it means to be a patient now and in the future.
This project will adopt a multi-sited, qualitative approach to explore transformations in cancer patienthood in the post-genomics era in all of its dimensions, examining the implications of these changes for cancer patients, their families, health care professionals and the wider public. The researchers will conduct multiple interviews, observations and group discussions, in order to explore how developments in cancer research and their clinical application change people’s experiences of cancer risk and treatment, their relationships with health professionals and clinical researchers, and their hopes and concerns for the future. This will explore four main themes: the social issues involved in delivering stratified/personalised medicine; how new risk factors, screening, early diagnosis and monitoring for survivors fit with ideas about and experiences of being a patient; how patients think about being involved in cancer research, especially clinical trials; wider public engagement in cancer, the role of social media and new types of patient groups and activities. Working closely with patients, clinicians and scientists, the research will contribute to improvements in health policy and service delivery in this important field.
We will be tweeting and blogging regularly about the project and providing commentaries on cancer stories in the news at @CancerandSoc21C. For more information, please visit our dedicated website for the project http://www.cancerandsociety.ac.uk. For further information about the project, please contact Dr Julia Swallow (J.E.Swallow@leeds.ac.uk) and Dr Choon Key Chekar (C.K.Chekar@leeds.ac.uk). If you are interested in patient and public involvement activities and want more information about them, please email us at firstname.lastname@example.org.