Exploring research participation among cancer patients: analysis of a national survey and an in-depth interview study

BMC Cancer
Louise Mc Grath-LoneHelen Ward

Abstract

Inequalities in cancer research participation are thought to exist with certain groups under-represented in research populations; however, much of the evidence is based on small-scale studies. The aim of this study was to explore data from in-depth interviews with cancer patients and a large national survey to investigate variation in who is asked to participate in research and who takes part. Factors associated with research discussion and participation were explored in National Cancer Patient Experience Survey data using multivariate logistic regression and during in-depth interviews with 25 breast cancer patients. Survey data were available for 66,953 cancer patients; 30.4% reported having discussions about, and 18.9% took part in, research. Barriers to participation at staff, patient and trust level were evident; for example, staff were less likely to discuss research with older patients, Asian and black patients were less likely to take part and patients treated at specialist or teaching trusts had higher levels of discussion and participation. Interviews showed that patients' willingness to participate changed over time and was not synonymous with participation as some were ineligible. Some patient groups were less likely...Continue Reading

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Citations

May 18, 2018·Clinical and Translational Science·Pearl A McElfishMarie-Rachelle Narcisse
Sep 19, 2019·Journal of the American Medical Informatics Association : JAMIA·Amir Alishahi TabrizJennifer Elston Lafata
Apr 21, 2020·Plastic and Reconstructive Surgery. Global Open·Joseph P CorkumToni Zhong
Sep 26, 2017·Clinical Journal of Oncology Nursing·Janet Gordils-PerezKathryn J Trotter
Jan 15, 2021·Medical Anthropology·Ignacia Arteaga Perez
Apr 27, 2018·Contemporary Clinical Trials Communications·Jeffrey J Hardesty, Norma F Kanarek

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