Description
BackgroundPatient and public involvement involves “working collaboratively with patients and the public and sharing decision-making” in research. Undertaking effective patient and public involvement ensures meaningful and impactful research retains a focus on patients, caregivers and the public.
Aims & Objectives
This work describes how a model for patient and public involvement has been developed in conjunction with the Fife Community Advisory Council to aid the development and implementation of a mixed methodology PhD project.
Methods
After introductory emails and a focus group, our “Public Advisory Group” (PAG) was formed with six public members many of whom have lived experience of caring for people with multimorbidity at the end of life. There has been a variety of activities to date undertaken to develop, shape and implement our research including co-development of research concepts and aims, production of lay summaries for submissions and co-design of patient facing materials for recruitment.
Results
Key messages learned working with the PAG:
- Members motivations, personal and professional backgrounds suit particular projects
- Importance of language: PAG > PPI; caregiver > carer; multiple long-term conditions > multimorbidity
- Sensitivity and support essential for potential research participants, PAG and researchers alike in this emotive field
Conclusion
Embedding patient and public involvement into our research has enriched our research and been hugely beneficial to both the research we are undertaking and the process of learning during this PhD whilst giving a voice to bereaved caregivers, whose valuable lessons are often forgotten.
| Period | 25 Oct 2023 |
|---|---|
| Event title | NHS Fife & University of St Andrews School of Medicine Second Annual Collaborative Research and Innovation Symposium |
| Event type | Conference |
| Degree of Recognition | Regional |