Dr Clair Le Boutillier
King’s College London
Personalised cancer care and support: Identifying what good looks and feels like and co-designing improvements
Background
Advances in prevention, early detection, and treatment mean that people are now living with cancer as a long-term condition. Personalised care and support planning (PCSP) offers a way to support people to manage the impact of their cancer, and leads to improved experience of care, enhanced quality of life, and reduced health service use. In the UK, the NHS long-term plan offers a comprehensive model of PCSP and commits to offering a holistic needs assessment (HNA) and care plan to all people diagnosed with cancer as standard care. Electronic versions of HNA such as the electronic Holistic Needs Assessment (eHNA) allow for digital PCSP. However, the content, delivery, and timing of PCSP differs across practice. The aim of the study is to gain a better understanding of how PCSP works (or not) from the perspectives of people who are living with colorectal cancer, and clinicians, and to co-design improvements.
Approach
The study will use a collaborative, participatory, multi-modal approach that blends the double diamond process, Video-Reflexive Ethnography (VRE) and Experience-Based Co-Design (EBCD). The UK Design Council’s double diamond process provides a creative thinking framework, VRE (including think aloud interviews) will be used to review current practice (and to identify what good practice looks and feels like). EBCD will be used to prioritise and co-design improvements.
The study will go on to explore if and how a patient-centred conceptual framework, called the Adversity, Restoration and Compatibility (ARC) framework, which is built from a synthesis of 73 studies of personal experience, can be used to inform the co-design of PCSP that better supports personalised care. This framework outlines three interlinked themes: Adversity (realising the impact of cancer and treatment), Restoration (managing and coping with new challenges) and Compatibility (reflecting on how cancer has affected life).
Lastly, end-of-study interviews will be conducted with research participants to reflect on the experience of taking part.