It’s ok to ask – but who doesn’t get asked? Variations in research conversations with patients and potential participants


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Carolyn Morris1, Richard Stephens1, Matthew Baker1, Rachel Brannan2, Sheila Fisher3, Jane Hanson4, Karen Inns3, Sue Pavitt6, Karen Poole3, Reg Race7, Robert West6, Yoryos Lazaropoulos5
1NCRI Consumer Liaison Group, Leeds, UK, 2National Cancer Intelligence Network, London, UK, 3National Institute for Health Research Cancer Research Network, Leeds, UK, 4Sussex Cancer Research Network, Sussex, UK, 5School of Clinical Sciences University of Cambridge, Cambridge, UK, 6Leeds Institute of Health Sciences University of Leeds, Leeds, UK, 7Quality Health, Derbyshire, UK

Background

The 2012 National Cancer Patient Experience Survey (NCPES) showed wide variation in responses to new questions about participating in research. Patients were asked if they’d had a discussion about taking part in research. If so, if were they glad to have done so and if not, whether they would like to have been approached. NCPES 2013 features refined questions on research, building on 2012 findings.

The inclusion of research questions has been led by consumers.

Method

NCPES questionnaires are sent to patients treated at every acute trust in England over a 3-month period

Results

The 2012 survey had a response rate of 68%, giving the detailed views of over 71,000 patients

First analyses showed that 33% of respondents recalled a discussion about research, and 95% of those were glad to have been asked. Of those not asked, 53% would like to have been, with significant variation by cancer type & where patients were treated (presented at NCRI 2012).

New analyses now demonstrate the impact of age, gender and deprivation and link these findings to research activity in individual Trusts.

NCPES 2013 will enable analyses of changes in those approached and provide new data on patient participation rates and research awareness.

Conclusion

Patients’ chances of having a conversation about taking part in research depend on a number of factors beyond issues of eligibility. Our findings will add to understanding of the factors at play and, for the first time, enable exploration of differential take –up rates in stratified population groups and geographical areas.

Consumer led action on equality of access, peer review of multi -disciplinary teams and tumour groups, and performance management of research networks are among the impacts of work informed by these 2012 NCPES findings.

Beyond cancer, NCPES 2013 results will inform continued work across NIHR.