Keeping the Customer Satisfied? #5 – Who’s Talking? Findings On Research Conversations From The National (English) Cancer Patient Experience Survey 2015


Session type:


Richard Stephens1,Matthew Baker2,Carolyn Morris2
1NCRI,2NCRI Consumer Forum



The annual Cancer Patient Experience Survey includes the question, ‘Since your diagnosis, has anyone discussed with you whether you would like to take part in cancer research?’ The new (2015) national Cancer Strategy, Achieving World Class Outcomes, highlighted the importance of patient experience. The Cancer Dashboard (2016) has a key CPES-derived metric for patient experience. Analysis of the 2013 CPES data showed that research participation is associated with higher levels of patient satisfaction with their overall experience1.


All in-patient and day case cancer patients treated in the 148 acute and specialist Trusts in England between April and June 2015 were offered the opportunity to complete the 2015 NCPES questionnaire. Over 71,000 (66%) responded, with national results published in June 2016, Trust- and CCG-level reports in July 20162.


28% of patients reported having had a discussion about research participation. This compares with 33% (2012), 32% (2013), and 31% (2014). Having a discussion about research participation continues to vary significantly by Trust and cancer type. By Trust the variation extends from 11.7% of patients reporting a discussion to 55.2% of patients. Past years were 14%-56% (2012), 11%-62% (2013), 10%-61% (2014) and 11%-55% (2015)3.  By cancer type the variation extends from 13.3% of patients reporting a discussion to 34.8% of patients, consistent with previous years; 15%-39% (2012), 16%-38% (2013), 14%-375 (2014), 13%-35% (2015)4.


Improving the patient experience and encouraging participation in research are both national policy objectives. The continued fall in the proportion of patients reporting a research discussion is thus doubly disappointing. It may be explained by the changing ecology of cancer research, but the wide variations in performance by Trust suggest otherwise.  Significant inequalities still exist for patients in gaining access to opportunities to participate in research and potentially to an improved patient experience.