The international policy imperative for involving consumers within research design and implementation is clear. However, achieving this in a meaningful way that demonstrates outcomes remains a challenge.
To determine how to co-design a research protocol with palliative care consumer representatives.
A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se. The case study was a qualitative study interviewing people with palliative care needs and their families about how to optimise hospital based palliative care.
Eleven consumers (bereaved carers (n=7), people with palliative care needs (n=2) and cancer survivors (n=2)) contributed across five panel meetings, with 6 attending more than one panel. Analysis of documented feedback led to four key areas of protocol change centering upon improving the participant’s experience from recruitment through to participation. Specifically, feedback focused on:
The resulting protocol was reviewed by a Human Research Ethics Committee and accepted without changes, despite the vulnerability of the study population.
Authentic consumer engagement requires time and effort. However, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided.
Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives. Engaging with consumers to co-design research leads to valuable change and ought to be prioritised at the commencement of all research design.