Table 1 An ethical approach to PPI: adapting the approach for this project
Step | Ethical approach | RE-EQUIPP plan |
|---|---|---|
1 | Prioritise PPI for palliative care research | All co-applicants and researchers were committed to PPI. Well defined workstream and clear aims for PPI for the partnership were agreed |
2 | Ensure equity of access to PPI (Justice) | RE-EQUIPP had a specific focus on Equity, Equality, Diversity and Inclusion. Opportunities to extend PPI to people from diverse and deprived backgrounds were devised in collaboration with existing groups, including the University of Sheffield DeepEnd Research Alliance, based in primary care serving the most diverse and deprived populations |
3 | Agree language and work towards a shared understanding of tasks | Language in palliative care was discussed early and a “jargon buster” created |
4 | Gain verbal informed consent for PPI | PPI members voluntarily joined the partnership and workshops. Information was provided so that PPI members could make an informed choice about whether to volunteer. PPI members were reminded that they were under no obligation to take part and could stop attending / end their involvement at any point in the partnership work |
5 | Maximise the benefits for PPI group members | Potential benefits for PPI members included being involved in new learning as the partnership developed, building new networks, opportunity to co—design new resources, take part in presentations, writing papers and future research grant applications |
6 | Minimise the risk of harm | Each aspect of PPI was designed carefully to avoid potential harm (including emotional distress). Meeting agendas and activities were designed in partnership with PPI members either specifically for an event, and overseen by the Steering Group, where there were two PPI members |
7 | Provide training for the researcher | Researchers with a range of PPI experiences worked together through the hub and spoke model of the RE-EQUIPP partnership to share experiences and learning |
8 | Offer training for the PPI group | An informal pre-workshop meeting was held to ensure PPI members felt they were prepared and had the skills to contribute. The workshops were exploratory in nature so no specific training was required |
9 | Provide funding and recognition | PPI members were reimbursed for their time and expenses with either bank transfers or vouchers, according to their preference |