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


METHODS
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.


RESULTS
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.


CONCLUSIONS
Some patient groups were less likely to have discussions about or participate in research. Analysis of this variation vis-à-vis the composition of the patient population may be useful to ensure that there is equity regarding the potential benefits of research participation and that research findings are applicable to target populations in the translational model.
Patient Experience Research Centre, Department of Infectious Disease Epidemiology, School of Public Health, Imperial College London, St. Mary's Campus, Norfolk Place, Paddington, London, W2 1PG, UK. louise.mc-grath-lone@imperial.ac.uk.
Louise
L
Mc Grath-Lone
Patient Experience Research Centre, Department of Infectious Disease Epidemiology, School of Public Health, Imperial College London, St. Mary's Campus, Norfolk Place, Paddington, London, W2 1PG, UK. s.day@imperial.ac.uk.
Sophie
S
Day
Patient Experience Research Centre, Department of Infectious Disease Epidemiology, School of Public Health, Imperial College London, St. Mary's Campus, Norfolk Place, Paddington, London, W2 1PG, UK. c.schoenborn@imperial.ac.uk.
Claudia
C
Schoenborn
Patient Experience Research Centre, Department of Infectious Disease Epidemiology, School of Public Health, Imperial College London, St. Mary's Campus, Norfolk Place, Paddington, London, W2 1PG, UK. h.ward@imperial.ac.uk.
Helen
H
Ward
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001943:Breast Neoplasms / Q000473:pathology*; D002986:Clinical Trials as Topic / Q000379:methods* / Q000706:statistics & numerical data; D003430:Cross-Sectional Studies; D005260:Female; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006306:Health Surveys; D054625:Healthcare Disparities / Q000706:statistics & numerical data; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000706:statistics & numerical data*; D018579:Patient Selection; D055815:Young Adult