Objective: Despite recognition that consumer involvement improves the quality, relevance, and impact of palliative care research – there are few models available to connect community voices with health systems for meaningful, two-way sharing of experiences. Voices for Palliative Care (Voices) is a consumer and carer-led collaborative of individuals with a lived experience of serious illness who contribute to research, service development and community awareness. Voices was established in 2022, in response to identified opportunities to increase consumer involvement within palliative care initiatives and promote active community partnership.
Aim: To describe the development of the Voices model, underpinning a novel community involvement initiative in palliative care, and the outcomes from a pilot phase of implementation.
Sample: This project utilises a co-design approach and mixed methods for data analysis and collection, including qualitative interviews, focus groups, and descriptive data from Voices meetings.
Procedures: Consumer representatives have partnered with palliative care researchers to ensure that the model and resulting outcomes have relevance and utility for the community.
Results: Fourteen members attended 15 meetings over 2.5 years, to co-design the Voices model. The model operates across two spheres of influence: systems of care and community. In the systems sphere, Voices provides mechanisms for researchers to consult with members, either individually or collectively. Voices members have partnered on eight research projects, and preliminary results indicate improved understanding and collaboration between researchers and consumers, and research that is grounded in the experiences of the community. In the community sphere, Voices has developed consumer-informed messaging and participated in media campaigns to raise palliative care awareness.
Conclusion
Findings from the pilot phase indicate the potential of consumer-led initiatives to enhance palliative care research and practice. Future steps include mapping the impact of the VOICES model and developing a national framework for consumer involvement specific to palliative care.