Stuart and Derryn highlight discussions about patient experiences following presentations at the September CLAHRC Research Partners Meeting.
What Can Patient Experience Tell Us?
Following the publication of the government white paper Liberating the NHS in 2010 the NHS Outcomes Framework was introduced that included three pillars: Clinical effectiveness, patient safety, and patient experience. This puts patient experience at the centre of the NHS’ success. Whilst patient experience is desirable, does it deserve equal attention as clinical effectiveness and patient safety?
This question led Laura Lennox, Associate Lead for Improvement Science and Quality Improvement at CLAHRC Northwest London, to explore the link between patient experience, clinical effectiveness, and patient safety. In her 2013 systematic review she reviewed 55 publications, including 40 studies and 15 systematic reviews to explore evidence of the links between patient experience and outcomes of clinical effectiveness and patient safety.
The NIHR has indicated that good quality systematic review can be essential in engaging policy makers with research evidence, which may indicate why this systematic review has been so popular with more than 240 citations, an alt-metric score of 426 and getting picked up in a number of blogs and news-outlets.
The systematic review found patient experience consistently associated with safety and effectiveness across a range of disease areas, settings, population groups, and outcome measures. Identifying 429 examples of positive associations compared with 127 examples where no association was seen*. Positive associations between patient experience and outcomes were seen across a range of measures including objectively measured health outcomes such as mortality, blood glucose levels, and medical errors but also in self-reported health and well-being outcomes like health status and functional ability. In addition, positive associations were seen between patient experience and adherence to recommended treatment, use of preventive care services likely to improve health outcomes, and screening for a variety of conditions. Furthermore, associations with reductions in healthcare resource use such as hospitalisations and re-admissions were also reported.
This highlights that patient experience isn’t just a measure of satisfaction but can be actually linked to safety and effectiveness.
*cases where one measure of patient experience has a statistically significant association with one or more clinical effectiveness or patient safety variable
What Social Role Does ‘Patient Experience’ Have?
The link between patient experience and involvement in healthcare was picked up in a subsequent presentation from Angela Filipe, a research fellow at the London School of Hygiene and Tropical Medicine. The School has a long standing collaboration with CLAHRC Northwest London led by Cicely Marston and Alicia Renedo, who have published significant amount of work, especially relating to how quality improvement culture facilitates patients’ collaboration with healthcare professionals, how spaces created for PPI can both help and hinder patients in influencing healthcare and identifying that patients involved in healthcare improvement can develop contradictory identities.
Angela presented some findings from ongoing, qualitative research that suggested that patients’ early experiences of diagnosis and healthcare play a formative role and affect subsequent interactions with services and staff. In the discussion, a study was highlighted from the 1990s, undertaken in a paediatric department in the US that demonstrated by ‘front-loading’ consultations with parents to build good relationships and provide sufficient information often results in a reduction of follow-up appointments, and improves their experience of the health system. Young people’s experiences were highlighted as a very useful example of how early experiences of healthcare affect subsequent conversations, expectations and interactions into adulthood and/or in long-term healthcare.
This immediately led to a discussion of these encounters and terminology, and the confusion that often arises within healthcare about these terms and whether they can have universal meanings. The examples Angela provided suggested that that a singular term like patient experience has significantly different meanings and values attached to it. In some instances, patients and service user researchers even contest them by bringing other experiences of wellness and professional expertise to the fore, in fact their whole life experience.
Paradoxically, some might think, many individuals who had had poor interactions with particular health services in the past (e.g. mental health services) got involved in some form of service improvement, of research and consultancy, and patient activism and leadership so as to improve the experiences of other service users and their families.
Does Putting Patients At The Centre In Health Systems Create Value?
This led a discussion of the ‘value’ of patient and public involvement, where often the involvement of patients should ‘add value’ to improvement endeavours and whether this was an appropriate way of viewing patient involvement.
Meerat Kaur, Associate Lead for Patient and Public Involvement at CLAHRC Northwest London, picks up this theme in her research which explores how healthcare professionals and patients and the public collaborate to improve health systems and how this can be optimised. An interesting aspect to Meerat’s work is the degree to which participant involvement can be used to leverage changes within the case studies researchers use to collect data.
Whilst Meerat uses ethnographic approaches similar to Angela’s work, her studies draw on pragmatism and aim to influence and enhance the way teams that she is working with engage with patients, this provides a real-life opportunity of testing hypothesis and strategies. The use of ethnographic approaches to investigate patient and public involvement in research and quality improvement activities is particularly popular. Where ethnography is the study of social interactions, behaviours, and perceptions that occur within groups, teams, organisations, and communities.
Meerat’s work includes a study to look at how value is co-created between healthcare professionals and patients within the context of quality improvement initiatives. Using both retrospective and prospective case studies Meerat hopes to build up a clearer picture of the process of co-creation and explore the notions of ‘value’ in patient involvement in healthcare.
In drawing these different but complementary studies together Laura has provided a basis of evidence from across different areas of healthcare that indicates that patient experience is clinically important and suggests that data about patient experience may help highlight strengths and weaknesses in effectiveness and safety. Angela’s work has begun to unpack the notions of patient experience and co-production what they mean to patients themselves. Meerat’s work explores the notions of value, and how this can be co-created within healthcare improvement initiatives. What all the studies highlight that patient experience measures can help provide a ‘whole-system’ perspective not available from patient safety and clinical effectiveness measures, especially where healthcare systems are fragmented. Furthermore, patients should be seen as partners in identifying poor and unsafe practice and engaged through productive means to support endeavours to improve the health system.
Have you ever had a bad patient experience? Do you think co-production will have a positive impact on patient experience? Comment and tell us your stories and opinions.