Dr Taline Artinian shares details of how Patient and Public Involvement and Engagement (PPIE) funding was used to support an upcoming Quality Improvement project, working with Experts-By-Experience to consider how decolonial approaches can be used to support equitable and meaningful PPIE work.
Amount of award: £600
Developing decolonial approaches to patient and public involvement and engagement (PPIE) is an important step towards making clinical research more equitable and inclusive. Projects are needed which move beyond theory to develop practical approaches that researchers can implement.
The PPIE Participant Payment funding supported consultations with Experts-By-Experience (that is, external contributors who bring personal experience expertise to a research project) from the DClinPGR Lived Experience Group (LEG). These were used to informthe design and development of a small-scale project exploring the implementation of decolonial approaches to PPIE in a clinical research setting.
Co-designing the project with Experts by Experience (EbEs) was essential to ensure that these approaches will be grounded in lived experience and reflect the priorities and perspectives of the groups they intend to serve. This fund also supported the co-design of the project, including development of the methodology, research questions, and framework for data collection and analysis.
Three EbEs, Mary Mancini, Marta Krawczyk and Leo de Sousa-Webb, took part in the consultations at three points over two weeks. The consultations were led jointly with a University of Exeter DClinPys trainee, Lillian Frazer-Green. These highlighted the value of planning, and embedding EbE involvement from the outset of the research process. They also emphasised the need for sufficient time and resources to ensure meaningful involvement and ongoing input.
Consulting with EbEs brought significant benefits to the planning of the project by ensuring that the research was informed by the perspectives of people with lived experience. Their input helped to identify areas that researchers may have overlooked, and improved the clarity and accessibility of study materials, enhancing the relevance of the project to PPIE practice. More generally, these consultations helped to promote and foster EbE engagement with projects on decolonisation in PPIE.
The consultation sessions served as a co-design process for our upcoming Quality Improvement (QI) project, giving Experts by Experience a voice in shaping its focus, objectives, and approach. The next step will be the collection of data from Experts by Experience to explore decolonial approaches to Patient and Public Involvement and Engagement (PPIE). The QI project, led by Liliian Frazer-Green, will examine how power is distributed and negotiated within PPIE processes, with the aim of identifying practical ways to challenge traditional hierarchies and support more equitable partnerships between researchers and Experts by Experience.