Using co-design to identify healthcare priorities for patients with incurable head and neck cancer

Background: 

Patients with incurable head and neck cancer (HNC) face complex care pathways, significant symptom burdens and psychosocial challenges. The complexity of symptoms, disease trajectory and the centralised, but often inequitable, services frequently lead to the patients’ and caregivers’ needs for support and care not being fully met. To address this gap, this study adopts a co-design approach, where patients, caregivers, and professionals collaborate to develop solutions that address service issues, aligning with the needs and priorities of both patients and caregivers. 

Methods: 

This qualitative exploration of co-design processes involved patients, caregivers, and healthcare professionals (HCPs) participating in one online and two in-person multi-stakeholder co-design workshops in Sheffield, UK. Patient vignettes were developed to illustrate typical care journeys and ‘stress points’ in service interactions. These vignettes were shared with 13 participants, including patients with lived experience of head and neck cancer, family caregivers, specialist nurses, and allied HCPs, to identify areas for improvement and co-develop potential solutions using prioritisation activities, group concept mapping, and facilitated group discussions.

Results: 

During the first in-person workshop, co-design participants (co-designers) identified and prioritised critical stress points in the care pathway, including a lack of support in caregivers’ preparedness and challenges navigating healthcare systems (specifically contacting the clinical team). Using these findings, the co-designers proposed various solutions, including introducing a single point of contact (care navigator) or a printed version of a personalised ‘roadmap’ of services, instituting a multidisciplinary discharge planning process to aid transitions to home care and implementing a dedicated 24-hour helpline staffed by knowledgeable personnel (HNC specialist staff) to provide patients with information. 

Conclusion: 

The co-design workshops have developed practical, user-informed intervention solutions to address the specific navigation challenges faced by people with incurable HNC. While the interventions developed are relevant in many ways to the broader HNC care pathway, they are particularly relevant to the complex needs of this group and are now guiding the next phase of interventions for improving patient-centred services.