Towards epistemic justice in the biomedical paradigm

Epistemic injustice occurs when credibility is inappropriately attributed due to prejudices. It could be described as a failure concept (by analogy with “success” verbs such as knowing, finishing, and achieving). 

There are numerous ways to fail at the same task (for example, multiple ways to be late for work on a rainy morning), as well as numerous ways to succeed. Thus, there are several ways in which medicine and healthcare fail to take the views of individuals in care seriously. Many philosophical and, increasingly, medical works demonstrate cases of epistemic injustice.

I am interested in the ways to succeed in giving appropriate credibility - on how epistemic justice might be realised in specific contexts of medical research or care. This is connected in part to my work on the concept of trust in healthcare institutions (with reference to vaccination hesitancy prior to the pandemic). I believe that epistemic justice can significantly improve this trust relationship (this is currently just an idea that I hope to develop soon). 

Partly, I am interested in focusing on ways to achieve epistemic justice rather than failures because, for several years, I have collaborated with doctors and people working in the healthcare system or in research, and from the inside, I see more and more willingness to accept different types of evidence on illness and people's health. Perhaps it's also because I'm an optimist.

Moving on to less abstract topics. In the EPIC project, I will be working with psychologist Rabih Chattat at the University of Bologna, analysing situations of epistemic injustice in dementia patients using a qualitative research methodology. We want to examine whether and how (in specific ways) healthcare providers fail to give credibility to people with dementia, and then suggest feasible solutions, or epistemic justice strategies.

At the same time, I am lucky to be working on another two interdisciplinary medical research projects. One is the DARE-Digital lifelong prevention project, which aims to provide support and a regulatory framework for e-health prevention technologies being developed in Italy, such as AI-based models for clinicians to understand a person's risk of a specific disease, as well as apps for patients to monitor their personal risk, for example the risk of falls for an elderly person with fragile bones. 

We know that these technologies pose a considerable risk of epistemic injustice. However, I feel it is worthwhile exploring how apps or AI-based systems might serve as strategies for achieving epistemic justice. How? In short, my fall-risk app can assist me in explaining to the doctor and family members why I feel unsafe while walking; the data it displays will can help validate my experience in addition to translating it into "medical speak." It is undoubtedly not the subjective experience that is directly taken at face value, but this translation. However, it could be a step forward towards epistemic justice. This will be discussed in a draft paper I am now working on. 

Last but not least, I am working on an EU Horizon Cancer Mission project called PREMIO COLLAB, which stands for personalised response monitoring in oncology: co-creating clinical trials in advanced breast cancer. This is a multicenter trial to determine which imaging modality is best for monitoring advanced breast cancer. What is the relevance of epistemic injustice in this context? While there has been much discussion about involving patients in treatment decisions, patients are almost never included in diagnostic decisions such as how many tests to perform, how frequently, and which ones. 

Diagnostics is in the hands of doctors. We will carry out qualitative study on patient preferences related to this in PREMIO COLLAB. We plan to convert our results into helpful recommendations for medical professionals regarding how to engage in a discussion regarding diagnostic options. These, in my opinion, can also be strategies for succeeding or achieving epistemic fairness from within the biomedical paradigm. 

Elisabetta Lalumera

Elisabetta Lalumera works at the Department for Life Quality Studies, University of Bologna, Italy. 

She is a project partner for EPIC, working on the Discounting Dementia case study.