Values and value-based healthcare: what do these mean in advanced illness? Exploring personal values and testing whether a value-based framework can be developed to improve care in advanced illness
Healthcare systems across the UK are under considerable strain to adapt to pressure associated with growing numbers needing care, and the increasingly complex needs of people with advanced life-threatening conditions reaching the last years or months of life.
A person’s values and priorities can profoundly affect how they experience health problems and their need for care and support, particularly if care and interventions are divorced from their personal values. There is limited empirical evidence regarding personal values which different patient populations hold in relation to their healthcare. There is more to understand about what constitutes best personal value for individuals, particularly in the context of advanced, life-limiting illnesses, and how this might be used to inform service provision to achieve improved outcomes. Healthcare providers could benefit from focusing on providing services which align more closely with the values and priorities of people with advanced illness and their informal caregivers.
This first phase of this project is a systematic review of published evidence on the personal and societal values of people with advanced life-threatening illnesses. For phase 2, identified personal values will be compared with routinely collected data on patient and carer concerns to identify whether values are expressed as concerns. The third phase consists of in-depth interviews conducted with patients and their carers (or individuals important to patients), to identify what constitutes personal values and whether care provision is aligned with these values. Findings from phases 1-3 will be integrated and discussed at consensus building workshops to determine whether a value-based framework can be developed to improve care and inform interventions in advanced illness.