For everyone who uses the health system experience of care is an important outcome, for some the phrase “the experience is the outcome” is literally true. Patient experience is one of the five overarching domains of the NHS Outcomes Framework that sets the big picture agenda for health.
A working definition of patient experience to guide its measurement across the NHS has recently been agreed by the NHS National Quality Board:
Respect for patient-centred values, preferences, and expressed needs, including: cultural issues; the dignity, privacy and independence of patients and service users; an awareness of quality-of-life issues; and shared decision making;
Coordination and integration of care across the health and social care system;
Information, communication, and education on clinical status, progress, prognosis, and processes of care in order to facilitate autonomy, self-care and health promotion;
Physical comfort including pain management, help with activities of daily living, and clean and comfortable surroundings;
Emotional support and alleviation of fear and anxiety about such issues as clinical status, prognosis, and the impact of illness on patients, their families and their finances;
Welcoming the involvement of family and friends, on whom patients and service users rely, in decision-making and demonstrating awareness and accommodation of their needs as care-givers;
Transition and continuity as regards information that will help patients care for themselves away from a clinical setting, and coordination, planning, and support to ease transitions;
Access to care with attention for example, to time spent waiting for admission or time between admission and placement in a room in an in-patient setting, and waiting time for an appointment or visit in the out-patient, primary care or social care setting.
The National Institute for Health and Clinical Excellence have also just produced a clinical guideline (NICE clinical guideline 138) on improving the experience of care for people using adult NHS services. For anyone who has been watching the debate about the risks and benefits of breast cancer screening, is involved in explaining risk or has had their own risks explained to them, the sections on shared decision making and principles to be used when discussing risk, such as using natural frequency (for example 10 in 100) rather than percentage (10%) and importance of using absolute as opposed to relative risk (for example the risk of an event increases from 1 in 1000 to 2 in 1000, rather than “the risk of the event doubles”) will be of great interest.
The NHS Institute for Innovation and Improvement launched a complete guide to improving patient experience; “Transforming patient experience, the essential guide” containing a range of examples, research evidence and tools for developing the evidence based for measuring and improving patient experience. This guide covers patients being involved the design of services which is a right under the NHS constitution, as well how patients and carers, healthcare professionals and managers can start to transform how people using the service and those providing the service work together to achieve better outcomes.