Background There are significant policy and health service imperatives for consumer and community involvement (CCI) in informing palliative care research and service delivery. Although the philosophy of palliative care centres on holistic values and care for patients, family and carers lives, CCI in palliative care research is less advanced than in other areas of health and social care research and there is limited understanding of consumer experience in palliative care research.

Aims The aim of this study was to explore experiences of CCI participation in informing palliative care research and service delivery, and to identify enablers and methods for successful modes of engagement. These findings were used to inform the development of a novel CCI initiative in palliative care.

Methods Consumer representatives partnered with project investigators to ensure that this project includes palliative care consumers as co-designers and co-knowledge translators of project outcomes.

Semi-structured interviews were conducted with twelve consumer experts (community members who have been involved in CCI programs) and ten consumer coordinators (researchers and clinicians who have coordinated CCI programs) in palliative care research in Australia and the United Kingdom. Interviews were transcribed and subject to inductive thematic analysis.

Results The following themes were identified as enablers to successful CCI in palliative care research: relationship building and maintenance between researchers and consumers; clarity around goals of involvement and; training and support. These enablers promoted a collaborative atmosphere between researchers and consumers and enhanced personal and collective experiences of CCI participation. These results were used to inform the development of a novel, consumer led model for CCI in palliative care: Voices for Palliative Care.

Conclusion/Discussion This study uncovers a spectrum of enablers that potentially shape the extent and effectiveness of CCI in palliative care. This can result in fostering research that is highly relevant; methodologically robust and more likely to be feasible to implement.