Introduction Patient and Public involvement (PPI) is essential to ensure research is relevant, patient-focused and of high quality. Social distancing recommendations during the COVID-19 pandemic affected how PPI members engaged with research teams.
Aims To describe and evaluate PPI in a retrospective study evaluating 73,675 advance care planning records within a large Electronic Palliative Care Coordination System, Coordinate My Care, conducted during the COVID-19 pandemic.
Method PPI was evaluated against each of the six UK Standards for Public Involvement.
Results Inclusive Opportunities: The project was presented to the Patient, Public and Carers Research Review Panel of the Royal Marsden (PPCRRP) at its conception. Three members offered their involvement and continued as co-investigators throughout the project. The study was supported by a National Institute for Health Research grant.
Working Together: Following COVID-19 restrictions, meetings were held virtually. While this enhanced accessibility, some important aspects of working together in person were diminished. PPI helped shape the study design, research applications, data interpretation and dissemination of findings at conferences and in journal publications.
Support and learning: The PPCRRP provided a supportive and educational infrastructure for our PPI members. Potential knowledge gaps were anticipated with appropriate teaching within discussions. Conversations about end-of-life care were sensitively managed.
Communication: Regular communication and engagement in plain language were maintained throughout the research by email and during virtual meetings.
Governance: Strong PPI presence in research committees within the organisation.
Conclusion Impact, lessons learned and conclusions: PPI enhanced the relevance, patient-centeredness and quality of this study reinforcing the important contribution of PPI within palliative care research. Social distancing constraints meant involvement was entirely virtual enabling increased access. The emotive subject matter that is frequently discussed in palliative research was addressed safely and sensitively. PPI can continue in a virtual sphere; further work is needed to evaluate PPI experience and ensure appropriate support is available.
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