Values and value-based healthcare in advanced illness
Research type
Research Study
Full title
Values and value-based healthcare: what do these mean in advanced illness? Exploring personal values and evaluating whether a value(s)-based palliative care model can be developed to improve care in advanced illness
IRAS ID
349120
Contact name
Marsha Dawkins
Contact email
Sponsor organisation
University of Hull
Duration of Study in the UK
2 years, 8 months, 29 days
Research summary
This research aims to understand the personal values of patients living with advanced illnesses and their unpaid carers and their influence on healthcare priorities to co-produce a framework for palliative care based on these values.
Palliative care improves quality of life of patients and carers by preventing and relieving suffering through treating physical and other problems to help patients facing life-threatening illnesses live their remaining life to the full. As more people are living longer, dementia and cancer are increasing as these illnesses are more common in older age. This has resulted in more people needing palliative care.
We want to understand if using an approach that focuses on improving the care people receive, by looking at the personal values of those with advanced illness is feasible and sustainable, and if this approach leads to improvements in the quality of care for patients by creating greater opportunities to shape how palliative care service is delivered. Little is known about the views and values of patients and families using palliative care services; most studies have focused on clinicians' and healthcare funders' views.The study involves incorporating the findings from a previous systematic literature review on personal values and value-based healthcare and a patient and public consultation exercise. In the first instance, interviews will be conducted with people living with advanced illness and their families to understand how their personal values are described and understood, how these values inform healthcare choices and whether these align with published research on values and value-based healthcare. These findings will inform the initial conceptual model of value(s)-based palliative care.
This study will then involve conducting two workshops with Patient and Public Involvement partners, healthcare professionals and policymakers to refine and co-produce a framework or model of value(s)-based palliative care for people with advanced illness.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
25/PR/0501
Date of REC Opinion
22 May 2025
REC opinion
Further Information Favourable Opinion