Professor of Primary and Prehospital Health Care, Community and Health Research Unit (CaHRU), University of Lincoln, UK
Steve Gillam MD FFPH FRCP FRCGP
Department of Public Health and Primary Care, Institute of Public Health, University of Cambridge, UK
Received date: 3 January 2014; Accepted date: 6 January 2014
The patient perspective is central to quality improvement. This article describes how health services are involving individuals and the public in improving healthcare. It describes the importance and different methods of accessing patient and carer feedback on satisfaction, experience and outcomes, and explores current thinking on individual involvement, engagement in commissioning, and the role of the public in redesigning health services.
focus groups, general practice, inter-views, patient perspectives, primary care, quality improvement, regulation
This, the sixth in our series of articles on quality improvement tools and techniques, focuses on patient perspectives on healthcare quality improvement and how we might involve patients, carers and the public in developing our notions of quality and in monitor-ing and regulation. Previous articles in the series have considered: frameworks for improvement, understand-ing processes and how to improve them, leadership and management, measurement, commisioning for quality and systems and spread.
Previous articles have emphasised the primary im-portance of patients’ perspectives on quality. Indeed, it could be reasonably asked, what perspective of quality is there other than the viewpoint of the patient, whether this relates to the care that they receive or the clinical outcomes that they experience? Understanding what service users value is usually the key to knowing where we should focus quality improvement and, just as importantly, how we should bring about improve-ment or judge whether it has been achieved. This requires a major shift in our thinking from patients being (passive) recipients of care to being (actively) involved in informing and improving services.
Unfortunately, in the past, quality and improve-ment in healthcare have focused on what professionals think should be valued and have been less interested in what service users felt was important or have failed to elicit patients’ views directly. Professional perspectives are a proxy for that of the patient, but there may be occasions where the two diverge and the reasons for this need to be understood.
Recent major failures in health services, for example, those described in the Francis Report, have reiterated the importance of the patient perspective. To quote Robert Francis: ‘individual experiences that lie behind statistics and benchmarks and action plans that really matter, and that is what must never be forgotten when policies are being made and implemented.’ 
Academics, clinicians, managers and commissioners of services may all try to see issues from the patient perspective and claim to represent patients, but the involvement of patients themselves and their repre-sentatives in measuring satisfaction, experience and outcomes, in designing improvements in care and in making judgements about the quality of services, are the focus of this article.
Key quality frameworks have highlighted the import-ance of patient experience. For example, in the USA,the Institute of Medicine in their landmark mono-graph, Crossing the Quality Chasm: a new health system for the 21st century, referred to patient centredness, together with safety, timeliness, effectiveness, effi-ciency and equity, as the fundamental components of quality. ‘Patient centredness’ is a complex term that means different things to different people, but in this context refers to respect for an individual patient’s culture, social context and specific needs, and the patient being active in decisions about his or her own care.
In the UK Lord Darzi, in his report High Quality Care for All, sought to identify and address the key quality issues for health systems of safety, effectiveness and experience. This led to the development of the UK government white paper Equity and Excellence, which focuses on improving patient outcomes, the NHS Outcomes Framework which has ‘ensuring people have a positive experience of care’ as one of five outcome domains, and The NHS Constitution, which lays down the rights (and responsibilities) of patients and staff in order to achieve this. Recent studies have suggested that there is a consistent positive relationship between patient experience, effectiveness and safety, reinforcing experience as part of the quality triad.
More recently, in response to the review of failures at Mid-Staffordshire NHS Trust, Don Berwick and the National Advisory Group, in their publication Im-proving the Safety of Patients in England, expressed their view that patients and carers should be present, powerful and involved at all levels of healthcare organisations.
Finally, Bruce Keogh’s Review into the Quality of Care and Treatment Provided by 14 Hospital Trusts in England stated that we should involve patients, carers and members of the public as vital and equal partners in the design of services, and involve patients and clinicians as active participants in regulatory inspec-tions.
Patient satisfaction, experience, outcomes and in-volvement are overlapping, but not identical, con-cepts. Satisfaction and experience are both expressions of ‘utility’ or ‘happiness’ with services provided, which, of course, many people might prefer not to use.
There are many ways of eliciting patient views, ranging from those such as surveys or questionnaires that attempt to provide a broader more representative assessment from the population being sampled, to interviews, focus groups and patient stories that try to gain a more in-depth understanding. Other methods that provide lesser degrees of breadth and depth of views include online ratings, complaints and compli-ments, feedback from patient liaison services or par-ticipation groups and public meetings.
Patient satisfaction surveys are regularly undertaken in most health settings and are intended to provide a quantitative (and often representative) assessment of satisfaction with services in a number of domains. For example, the general practice patient survey linked to the Quality and Outcomes Framework covers areas such as access (telephone, face-to-face, in-hours, out-of-hours), continuity, communication, care (from the general practitioner, nurse or receptionist), support for self-care, and overall satisfaction. The questions and response formats are constrained by particular areas and issues which are considered to be important for service provision and patient satisfaction. Satis-faction levels with general practice are often high, but this does not necessarily mean that users’ experiences of services are good. This is partly because what health professionals think constitutes a good experience is not necessarily the same as what patients say.
For example, a focus group study showed how the complexities of patients’ wants and needs from a consultation for insomnia differed from what doctors thought patients wanted or needed. Patients wanted to be shown understanding, listened to and taken seriously. What they initially saw as a lifestyle problem had become medicalised, often leading to a request for a hypnotic prescription. Doctors felt that patients might not take non-drug treatments seriously and expected patients to be resistant to stopping drugs they were already taking or reluctant to explore alternatives, whereas patients, often deriving little benefit from drugs, were open to alternatives, such as psychological therapies. This understanding has been translated into an e-learning program for doctors, nurses and other health professionals.
To understand patients’ experiences implies seeking to see things from the patients’ perspective. This requires us to work with patients to gather information on what constitutes a good or a poor experience and this may vary by person and by setting. In the UK the Department of Health has tried to address what domains of experience might look like through a patient experience framework derived from those developed by the Institute of Medicine and the Picker Institute (Box 1).
Over the past few years, psychologists have begun to distinguish between the memory of an experience, and the experience as it happens, since what we usually refer to as experience is what we remember. This might seem an artificial distinction until we appreciate that our memory of an experience is affected not only by what happens during it, but by the peak experience (of pleasure or pain) and how the experience ends. If the peak is highly positive and ends well, this increases our likelihood of recollecting this as a good experience. Patient-related experience measures (PREMs) and patient-reported outcome measures (PROMs) are increasingly seen as important tools by healthcare providers, commissioners, regulators and service users. PREMs are brief questionnaires developed to measure people’s experiences of services, whereas PROMs are short, self-completion patient question-naires, which measure health status, health-related quality of life or experience of care at a point in time and change over time (pre and post intervention), from which the impact of healthcare interventions can be assessed. Outcomes have been found to be correlated with, but not distinct from, experience. The National Institute of Health and Clinical Excel-lence (NICE) has also developed statements on what constitutes good experience in adult services (Box 2). The various methods for accessing patient views have different pros and cons. These include issues of selection and reporting bias, representativeness, depth, complexity of analysis, and level of expertise, analysis and time required. Qualitative feedback is often more valuable than exhaustive quantitative surveys, but often a combination of both is required to under-stand experiences in depth and to compare andimprove services.
Involving patients to access their views and im-plement improvements is something that health ser-vices are at an early stage of addressing. Users may be individual patients, patient group members or patient representatives with different levels and types of knowledge, experience or approach, which might lead to conflicting views. There are demands from government and health organisations to increase patient involvement and – despite validated tools and much accumulated experience – tools, structures, strategies and methods for involving patients are still being developed.
For example, Transforming Participation in Health and Care sets out a grand vision for participation in the UK National Health Service (NHS) which pro-vides a framework for commissioners of services to promote individual participation in care and treat-ment, to engage the public in commissioning, to listen and act upon patient and carer feedback at all stages of the commissioning cycle, to engage with patients, carers and the public when redesigning health services, and to publish evidence of these activities and their impact on services (Box 3).
Another area in which the public are increasingly involved is regulation. For example, there is now greater lay and patient involvement in regulatory bodies (such as the Care Quality Commission, Moni-tor and professional bodies), regulatory inspections and appraisal of health workers, and this is likely to increase in future.
This greater level of patient and public involvement will require further research into what outcomes matter to patients and action on how best to meaningfully involve patients and carers. It will also require new structures at national and local levels of provider and commissioning organisations. Finally, it will also require training and resources for patients, carers and public representatives.
Commissioned; not externally Peer Reviewed.