Patients' Stories Used to Improve Care on UK Wards


A research project led by Oxford University is showing how patient experiences can be used to improve healthcare – not through targets and surveys, but by getting doctors, nurses and patients talking together about care on the ward.

Videos of patients talking about care they received at various hospitals are used to trigger a discussion between NHS staff, managers, patients and family members about the ward where they are. Ideas for change are prioritized and staff and patients work together as partners to introduce them.

The new approach has been used in pilot projects at two hospital trusts – Royal Brompton & Harefield NHS Foundation Trust in London and the Royal Berkshire in Reading.

Many of the changes that come out of the process may be small. But after a year of headlines that have focused on scandals of poor care in hospitals and social care, the approach brings compassion and dignity to the fore.

Simple examples included putting clocks on the wall where patients in intensive care can see them, where previously they may have had no sense of what time of day it is. Having teeth brushed more often and changing the time for patients' main wash were also important, while more comfortable V-shaped pillows for post-operative patients were also introduced. A lot of the changes involved providing better information to patients.

Improving patients' experience has become a priority for the NHS, and the NHS in England has led the way in measuring patient experience by introducing the first nationally mandated patient survey. Yet despite this and the efforts of staff committed to providing high-quality services, examples of poor care and the lack of a genuinely patient-centered approach have dominated healthcare debate in the last year. 

"We already know the aspects of care that patients and families think are important," says lead researcher Dr. Louise Locock of the Health Experiences Research Group at the University of Oxford. "The challenge is to find ways of enabling organizations to learn from this evidence, to move beyond gathering data and really use patient experiences to improve care." 

"This approach is a new way of boosting compassionate care by using patient stories to stimulate change," says Dr. Sue Ziebland, also of the Health Experiences Research Group.

The research carried out by the research group informs the health websites and These websites provide free, reliable information about health issues by sharing people's real-life experiences. Videos of people sharing their stories about cancer, autism, motor neurone disease, pregnancy, drugs, depression and much more mean if anyone is looking for good advice and reassurance on any of these conditions, they can find out what happened to around 40 other people in the same situation.

As well as providing a tremendous health resource for patients and families, the researchers have been exploring how the bank of patient experience they have built up can be used to improve healthcare services. 

This new work builds on an approach developed by professor Glenn Robert and others at King's College London, and Robert is also part of this research project. However, where previously new videos specific to the ward or hospital where the exercise is carried out would have to be developed, the large set of video clips of patient stories already collected by the Oxford researchers is made use of.

The Health Experiences Research Group now has an archive of around 3,000 interviews on over 80 different conditions or health topics. Using this existing video material to stimulate discussions between staff and patients cuts the time and costs of the process greatly, and makes the approach more scalable. 

Dr. Caroline Shuldham, director of nursing and clinical governance, led the pilot at Royal Brompton & Harefield NHS Foundation Trust, which focused on an intensive care unit (ICU) and services for lung cancer patients. Shuldham explains some of the changes that have been implemented as a result: "In the ICU, we are now providing additional information to patients and families. It's all about greater explanation to ensure they fully understand their treatment. We go through a plan of care for the day and make sure it is understood. We explain what the alarms mean on various bits of equipment and what happens when they go off. We have made sure that patient privacy and dignity is respected at all times, with new guidelines for when people shouldn't go through curtains, for example.  With lung cancer, patients can be in different places: they might be on a high dependency unit (HDU) or they may be on a ward. They move through the hospital as they get better and we now have better systems for making sure they can access their belongings at all times, wherever they are. A leaflet for patients before they have lung surgery now includes a page of advice from previous patients." 

She adds: "These changes are small wellbeing things which can be done quite easily. But most importantly, it gives staff at all levels a framework in which to work with patients.  These were wards that were already providing excellent care. But what the process does is allow people – staff and patients – to see through each others' eyes a bit. The big thing for me was that patients felt they were being listened to. They were impressed that when they raised things they were taken seriously. One member of staff commented that they'd worked in an ICU for 20 years and had never interacted with patients in this way. A manager explained how the process had really highlighted the effect that hospital administration and routine has on patients.'"

The research is funded by the National Institute of Health Research Health Services and Delivery Research (NIHR HS&DR) Program.

Source: University of Oxford

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