Co-designing palliative care research with consumers – developing relevant and appropriate research through collaboration and design

<p style="margin-top: 4px; text-align: justify;">Poster presented by&nbsp;Claudia Virdun</p> <h4 style="margin-top: 4px; text-align: justify;">Background:</h4> <p style="margin-top:4px; text-align:justify">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.</p> <h4 style="margin-top: 4px; text-align: justify;">Aim:</h4> <p style="margin-top:4px; text-align:justify">To determine how to co-design a research protocol with palliative care consumer representatives.</p> <h4 style="margin-top: 4px; text-align: justify;">Methods:</h4> <p style="margin-top:4px; text-align:justify">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&nbsp;<i>per se</i>. The case study was a qualitative study interviewing people with palliative care needs and their families about how to optimise hospital based palliative care.</p> <h4 style="margin-top: 4px; text-align: justify;">Results:</h4> <p style="margin-top:4px; text-align:justify">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&rsquo;s experience from recruitment through to participation. Specifically, feedback focused on:</p> <ol> <li style="margin-left:8px; margin-bottom:12px"><span style="tab-stops:list 36.0pt">getting the language in the recruitment materials and information and consent forms right;</span></li> <li style="margin-left:8px; margin-bottom:12px"><span style="tab-stops:list 36.0pt">developing a feasible and acceptable recruitment strategy;</span></li> <li style="margin-left:8px; margin-bottom:12px"><span style="tab-stops:list 36.0pt">opportunities to more clearly articulate the explicit value of this research for patients and families; and</span></li> <li style="margin-left:8px; margin-bottom:12px"><span style="tab-stops:list 36.0pt">support strategies for participants.</span></li> </ol> <p style="margin-top:4px; text-align:justify">The resulting protocol was reviewed by a Human Research Ethics Committee and accepted without changes, despite the vulnerability of the study population.</p> <h4 style="margin-top: 4px; text-align: justify;">Discussion:</h4> <p style="margin-top:4px; text-align:justify">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.</p> <h4 style="margin-top: 4px; text-align: justify;">Conclusion:</h4> <p style="margin-top:4px; text-align:justify">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.</p>