Co-designing a framework to communicate patient-centred outcomes in palliative care: involving patients and the public to reframe understanding

TL;DR

This study co-designed a communication framework with patients and the public to better explain palliative care's role in improving quality of life, beyond just end-of-life care.

Contribution

The novel contribution is a co-designed framework and resources that use patient-centered outcomes to reframe public understanding of palliative care through accessible formats like short films and infographics.

Findings

Clear, accessible formats like short films and infographics effectively reframe palliative care as a holistic approach.

Meaningful patient and public involvement strengthens communication of patient-centered outcomes and PRO evidence.

The co-produced framework supports broader palliative care communication and can be applied to other misunderstood health areas.

Abstract

Palliative care provides person-centred support to alleviate suffering in people with serious illnesses. However, common misconceptions that it is only for end-of-life care often delays timely access. This study aimed to co-design a framework and use it to co-produce resources that enhance public communication and engagement around patient-centred outcomes in palliative care—a field frequently overlooked despite its broader role in improving quality of life throughout the course of illness.

Two online co-design workshops, guided by the Knowledge-to-Action framework, engaged patients, public and senior leaders from health and social care systems. Public participants were recruited from the Cicely Saunders Institute Public Involvement Forum, while senior leaders were recruited from integrated care systems and their partners. Both workshops focused on presenting evidence from the CovPall study—a national multicentre cohort study that examined symptom changes in 572 severely ill or dying patients with COVID-19 who received palliative care. As many patients were too unwell to self-report due to the severity of illness, a proxy-reported version of the Integrated Palliative Outcome Scale adapted for COVID-19 was used. Workshops shared these findings and explored effective communication strategies, dissemination formats, stakeholder engagement, and ways to evaluate the impact of such communication. Discussions were analysed using thematic analysis. Results: Eighteen members of the public—including patients, carers, and individuals with lived experience of both roles—along with two local board members and one representative from a statutory health and social care body, participated and were actively involved in developing the framework and co-producing outputs through structured small-group discussions. Key findings highlighted the value of using clear, accessible, and culturally sensitive formats—such as short films and infographics—to reframe public understanding of palliative care as a holistic approach that addresses complex needs beyond just end-of-life care. Participants emphasised the importance of using insights from patient-centred outcomes and Patient-Reported outcome (PRO) data to build workforce capacity, improve services, and strengthen the connection between clinical and personal outcomes to maximise impact. As part of the study, we co-produced two resources that applied this framework in practice, demonstrating its potential to support more effective communication and public engagement. While based on COVID-19 outcome data, the co-produced framework and resources were developed to support communication that is relevant across broader palliative care settings.

This study found that communication of patient-centred outcomes and Patient-Reported outcome (PRO) evidence can be strengthened through meaningful patient and public involvement and engagement (PPIE). This approach helps to reframe public understanding of palliative care, highlighting its broader relevance beyond end-of-life settings. The findings show how PPIE can amplify the impact of patient-centred research by engaging wider audiences, promoting timely access to care, and supporting better use of data. While developed in the context of palliative care, the framework offers transferable strategies for communicating complex outcomes in other often misunderstood or stigmatised areas, such as mental health and dementia care.