Lived experience is one of the most paradoxical phrases commonly used in policy, practice and research, related to experience and engagement. Lived experience, however, miserably fails to encapsulate the ongoing nature of patient and family experiences. In reality, patient and family interactions with healthcare are often continuous, evolving processes shaped by their current and future needs, expectations and realities. To honour the dynamic nature of these interactions, talking about both lived and living experiences is crucial. This will help us move beyond a static and rigid view of quality, experiences and healthcare that persists in implicit yet significant ways.

Lived Experiences: A Static View

Lived experience implies that the reflections and narratives are constructed from past encounters within healthcare settings. These experiences provide invaluable insights into the strengths and weaknesses of healthcare systems from the patient and family perspective. They highlight critical areas for improvement, such as communication, empathy and the quality of care provided. Historically, research has extensively documented these experiences as there is no shortage of articles that use lived experience to refer to patient and family experiences.

However, the term lived experience inherently suggests a retrospective examination. It implies that the experiences have reached a conclusion, are static and can be neatly analysed in isolation, overlooking the fluid and ongoing nature of health experiences. However, for many patients and families, particularly those dealing with chronic illnesses, disabilities or long-term conditions, their interactions with healthcare systems are continuous, adaptive processes. Their needs and experiences do not end with a single encounter but evolve over time, influenced by ongoing care, changing health statuses and varying life circumstances.

Lived and Living Experiences: A Dynamic View

On the other hand, lived and living experiences recognize the continuous, dynamic nature of patient and family experiences. It shifts the focus from past experiences to the ongoing realities of people as they navigate their health journeys. Living experiences encompass the day-to-day realities of managing health and illness. They reflect the ongoing challenges, adaptations and interactions individuals face as they seek care, manage treatments and cope with their conditions. By acknowledging living experiences, healthcare systems can better appreciate the fluid nature of patient and family needs, enabling more responsive, adaptive and personalized care.

Using both lived and living experiences in healthcare may seem like a slight semantic adjustment, but words hold great power in our interactions with individuals, groups and communities. Using lived and living experiences – instead of lived experiences alone – represents an important shift in how we understand and respond to patient and family needs. It emphasizes the importance of the continuity of care and the need for healthcare systems to be flexible and responsive. This approach promotes the message that patient and family needs are dynamic, and engaging patients and families meaningfully in healthcare activities necessitates recognizing the needs, expectations and experiences that evolve with time.

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