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PUBLIC RELEASE DATE:
5-Mar-2014

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Patients' stories used to improve care on 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.

The new approach has been used in pilot projects at two UK hospital trusts Royal Brompton & Harefield NHS Foundation Trust in London and the Royal Berkshire in Reading. 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 prioritised and staff and patients work together as partners to introduce them. The research is funded by the UK National Institute of Health Research Health Services and Delivery Research (NIHR HS&DR) Programme.

The researchers have published the findings of the project in the journal Health Services and Delivery Research.

Many of the changes that come out of the process may be small. But after a year of headlines in the UK 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-centred approach have dominated healthcare debate 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 organisations 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 at the University of Oxford.

The research carried out by the Health Experiences Research Group informs the health websites Healthtalkonline.org and Youthhealthtalk.org. 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 Professor Robert is part of this research project too. 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.

Dr 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.'

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Notes to Editors

The researchers point out that failure to attend to basic human needs and dignity, documented in the Francis Report, has resulted in numerous recommendations to re-educate the healthcare workforce and initiatives to improve compassion. While no one would dispute the importance of compassion and kindness, they say there is a danger that this latest series of initiatives may produce more targets, tools and metrics to measure how compassionate staff are, rather than changing the culture to focus on the patient.

Dr Locock of Oxford University says: 'We believe that our approach is a way to help, rather than make staff feel criticised. It's done with patients, not managers. It's not target setting, but empowering.'

Oxford University's Medical Sciences Division is one of the largest biomedical research centres in Europe, with over 2,500 people involved in research and more than 2,800 students. The University is rated the best in the world for medicine, and it is home to the UK's top-ranked medical school.

From the genetic and molecular basis of disease to the latest advances in neuroscience, Oxford is at the forefront of medical research. It has one of the largest clinical trial portfolios in the UK and great expertise in taking discoveries from the lab into the clinic. Partnerships with the local NHS Trusts enable patients to benefit from close links between medical research and healthcare delivery.

A great strength of Oxford medicine is its long-standing network of clinical research units in Asia and Africa, enabling world-leading research on the most pressing global health challenges such as malaria, TB, HIV/AIDS and flu. Oxford is also renowned for its large-scale studies which examine the role of factors such as smoking, alcohol and diet on cancer, heart disease and other conditions.

The National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) Programme was established to fund a broad range of research. It builds on the strengths and contributions of two NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which merged in January 2012. The programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services, including costs and outcomes. The programme will enhance the strategic focus on research that matters to the NHS. The HS&DR Programme is funded by the NIHR with specific contributions from the CSO in Scotland, NISCHR in Wales and the HSC R&D Division, Public Health Agency in Northern Ireland. http://www.nets.nihr.ac.uk/programmes/hsdr

The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government's strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website.

This article presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.



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