Why real-time feedback really matters

by Claire O'Neill Patients and Families Involvement Development Manager Photo of Claire O'Neill

Marie Curie has just completed a pilot research project in Lincolnshire which enabled people in their last year of life to give immediate feedback about their care.

The Real Time Reporting Project was a partnership run by Help the Hospices, Marie Curie and the National End of Life Care programme (now part of NHS Improving Quality). Read the full report (PDF 907KB) The project focused on getting feedback from patients with different chronic health conditions, including dementia, as well as the frail elderly. We sought feedback in four different care settings: hospitals, care homes, hospices and patients’ own homes. People used handheld tablets to give their responses – usually with a volunteer to help them and have a chat at the same time. Patients and families greatly appreciated having somebody to talk to – volunteers also provided valuable "befriender"-type support. Volunteers were able to get more useful and honest feedback than nurses and other healthcare professionals. Patients were more likely to report the so-called little things that have a big impact such as "I know the nurse is busy, but I could really do with a fan as it’s quite warm.” Usually these issues could be fixed quickly. However, services have also been able to use patients’ feedback to make more significant changes.

A pioneering piece of work

It may seem surprising, but this was a pioneering piece of work. In the past, the NHS and other organisations have been worried that asking terminally ill people about their care might be inappropriate, and might cause offence. In fact, people were very happy to be asked their views. At Marie Curie we believe that getting feedback from patients and families is a vital part of meeting their needs. We have been running large-scale annual surveys across our hospices and the Marie Curie Nursing Service for many years, and we have always found that patients want to participate (although inevitably a small number are too ill to take part). These surveys have been really valuable for ensuring that our care is of high quality but they inevitably only provide a snapshot of how we are doing. That’s why we recently piloted real-time feedback at our two Scottish hospices in Edinburgh and Glasgow – and found that using tablet computers led to a big increase in the number of patients taking part. And we are starting to use real-time feedback in the Marie Curie Nursing Service too, with trained volunteers from Zurich Community Trust calling patients and families at home. The overwhelming majority of feedback we receive is highly positive – but we want to know where we can improve and how we can better meet the needs of patients and families. They are the people whose experiences and opinions really count.