53 Incorporation and evaluation of the patient and public involvement national standards within doctoral research focussed on the improvement of quality of life of patients with high-grade glioma

Mazzaschi, Francesca, Peddle, Sarah, Seddon, Katherine, Sivell, Stephanie ORCID: https://orcid.org/0000-0003-0253-1860, Byrne, Anthony and Nelson, Annmarie ORCID: https://orcid.org/0000-0002-6075-8425 2022. 53 Incorporation and evaluation of the patient and public involvement national standards within doctoral research focussed on the improvement of quality of life of patients with high-grade glioma. Presented at: 2022 Marie Curie Research Conference Improving End of Life, Virtual, 30 January - 04 February 2022. BMJ Supportive & Palliative Care. , vol.12 (Supple) BMJ Publishing Group, A22. 10.1136/spcare-2021-MCRC.53

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Abstract

Introduction The benefits of including patient and public involvement (PPI) are increasingly acknowledged by both researchers and funding bodies. However, it is not usually a required aspect of doctoral research and no specific guidelines for students wishing to incorporate PPI. PPI was integrated throughout a PhD project working towards the development of a screening tool for cognitive deficits experienced by patients with high-grade glioma (HGG), adhering to the UK national standards as much as possible. Aims To incorporate and evaluate the extent to which PPI adhered to the UK national standards and the value it added to this PhD project overall. Method PPI activities, and input to this project, were evaluated against the national standards and explored with prompts presented in an audit tool developed by Nelson and colleagues. Results It was challenging as a new researcher, to implement PPI by following the standards. As the standards are dependent on the policies of the institutional host (Wales Cancer Research Centre (WCRC)) in various ways, this led to some confusion as to the responsibilities of the researcher. Therefore, more project specific guidelines could be beneficial. That being said, the standards were met with a combination of steps taken within the project, the resources available and the procedures followed by the WCRC. Adhering to these ensured that the research was relevant for HGG patients and conducted with their needs in mind. Conclusion This evaluation shows the importance of PPI in health research and demonstrates how it can be successfully implemented in doctoral research. It also serves to highlight the gaps in guidance for researchers, as well as the lack of clear guidance available for new researchers.

Item Type:	Conference or Workshop Item (Paper)
Date Type:	Publication
Status:	Published
Schools:	Medicine
Publisher:	BMJ Publishing Group
ISSN:	2045-435X
Last Modified:	10 Nov 2022 10:35
URI:	https://orca.cardiff.ac.uk/id/eprint/147372

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