Introduction Background: High quality patient and public involvement and engagement (PPIE) ensures that research is effective, representative, and focused on patients’ needs.
Aims To describe PPIE activities and their impact in a palliative care study.
Method The six UK Standards for Public Involvement in Research were used to evaluate PPIE activity in a single site mixed-methods observational study.
Results Inclusive Opportunities: Early involvement of PPIE through the local Patient and Carer Research Review Panel.
Working Together: Co-design: PPIE members influenced the addition of the qualitative element.
Co-production for meaningful collaboration: PPIE member is being co-applicant on research grant and co-investigator. Involvement in writing the patient-facing documentation, plain language summary, study protocol and funding application.
Attendance at the Research Ethics Committee meeting. Involvement in qualitative data review and development of themes.
Governance: PPIE in the Trial Management Team and Trial Steering Committee.
Communication: Continuous involvement and engagement maintained (face to face/virtual meetings and emails) and PPIE contribution to dissemination (conference and journal publications).
Support and learning: PPIE organisational infrastructure with a dedicated PPIE lead and training opportunities. Dedicated bespoke PPIE digital platform enables involvement. Discussions about end-of-life were challenging for some members.
Conclusion Adequate funding, training about palliative care research and virtual meetings can facilitate engagement. Institutional leadership supports successful PPIE involvement in studies.
Impact Impact and lessons learned: PPIE increased the effectiveness and credibility of this study and raised awareness of PPIE in palliative care. Specific challenges but also drivers for PPIE within palliative care research include the vulnerability of participants and PPIE members and the subject matter (end of life, advanced cancer, palliative versus curative dichotomy).
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