Addressing Epistemic Injustice in research

The principle of Epistemic justice¹ (EJ) recognises the need for a person’s voice to be both heard (testimonial) and understood (hermeneutic) in the generation of meaning.

Funding bodies now require all research to have embedded PPI - an active partnership between patients, carers and the public with researchers, that influences and shapes research².

Current PPI initiatives potentially enable testimonial justice – ensuring voices are heard. But do they adequately support hermeneutical justice? This is the focus of my PhD.

My PhD uses the theory of epistemic injustice to take a new critical look at the principles and practice of PPI in research, using a case study of dementia research to explore how PPI accommodates vulnerable or overlooked groups.

¹ Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press.

² National Institute for Health Research. Briefing notes for researchers—public involvement in NHS, health and social care research. 2021.

1. Scoping review of best-practice guidelines

Aim: Understand current best-practice guidance literature on PPI in healthcare research with consideration of marginalized groups

“What does the guidance say we should be doing?”. This will allow me to consider whether policy guidance documents give value to the contribution of those with lived-experience, and if so, how does guidance recommend PPI practices are undertaken to ensure that participants feel heard and give meaningful contribution to the knowledge base and research process. I consider if and how principles of epistemic justice are reflected in the frameworks we use to describe best practice in health services research.

2. Literature review of current practice

Aim: Explore translation of knowledge from best-practice guidance into research practice

This study will allow me to use my understanding of current best-practice guidance to explore the reality of dementia research in practice and whether research has incorporated guidance of PPI inclusion into their methodologies. I will conduct a systematic search and analysis of a wider literature on experiences of doing PPI in practice. I will consider if and how person-centred research is translated into best practice guidelines for people living with dementia. “What does the guidance say we should be doing?”, but also “…and are we doing it?”.

3. Qualitative investigation into experiences of PPI participation

Aim: Explore experiences of participation in PPI groups in dementia research

I will use qualitative methods to gain an insight into the subjective experiences of participants in existing PPI groups, such as people with lived-experience of dementia and their carers.

This research will consider the personal impacts of participating in a PPI group such as feeling heard, and making relevant and meaningful contribution to research. This may also highlight difficulties experienced during the process, or any negative impacts experienced as a consequence of participation

4. Framework development

Aim: Summarise findings from all studies to develop a framework for improving epistemic justice in dementia research using PPI

Finally, findings from the literature reviews and in-depth qualitative investigations will allow for a deeper understanding of the strengths and limitations of PPI in dementia research.

My recent scoping review of PPI guidance helped me to develop a best practice framework for PPI in the UK. I then analysed dementia-specific guidance which has been developed to inform PPI which respects and acknowledges the specific needs of this group.

My findings so far indicate that a number of additional considerations can supplement PPI best practice guidance to better accommodate the needs of this area of research. However, my next stage of research will explore whether these principles from the guidance are reflected in practice, or if the guidance remains tokenistic. 

We presented the project at British Journal of General Practice Conference in March 2023.