Amplifying Patients' Voices in Healthcare: Epistemic Justice & the Path to Transformative Care - Jem Golden

In an earlier article published recently , I introduced the concept of epistemic justice in healthcare and how patients’ voices and lived experiences can be often marginalised by medical professionals including listening and acting on their priorities for treatment.

The piece focused on older people having chronic, not necessarily life-threatening conditions, and one example of this ‘marginalisation’ is people with severe, degenerative arthritis, for which research has shown that their priority is to manage fatigue, which is experienced as more debilitating, relatively speaking, than the acute pain in their joints. However, this need may not be properly heard nor acted upon by their doctors.

A follow-on article discussed a priority in treatment for many with chronic conditions is to maintain stability and be given the necessary resources and support by medical carers to self-monitor and report back on their condition and for this reporting to be taken seriously.

Surely, it is the patients themselves that are best positioned to explain changes to their symptoms; when it happened and how it has affected them physically and emotionally?

Miranda Fricker pioneered the core concepts of epistemic justice, while Havi Carel, a professor of philosophy, University of Bristol, is among its leading global exponents and she was interviewed for this article.

Professor Havi Carel's core ideas on epistemic justice in healthcare focus on how patients' voices and experiences are frequently undervalued or dismissed.

A central tenet of her work is that epistemic injustice arises when patients are not recognized as credible knowers due to biases related to their illness, gender, race, or other marginalized features of their identities. This leads to situations where their accounts of their own health, but also their expressions of needs and desires, are either ignored or downplayed, which can adversely affect their medical care and outcomes.

“Epistemic injustice can occur in many areas of life, but it is particularly pervasive and damaging in healthcare environments. Healthcare systems are large and bureaucratic and very complex, and it is critical not to lose sight of the person (not just the patient!) and the way that the person feels and communicates about themselves to the medical team.

Patients are constantly sharing vital information with their healthcare providers—whether it’s describing their pain, detailing symptoms, or answering questions like, "How long has this been happening?" If their accounts are met with scepticism, or with cursory attention, the quality of their care may significantly deteriorate”, she says.

One striking example occurs in childbirth, Carel suggests. A woman may state that she’s in severe pain but might be dismissed with comments that downplay her discomfort, suggesting it’s just part of the natural process. Similarly, assumptions about how different ethnic groups perceive pain can influence how clinicians respond, often resulting in inadequate pain management.

Havi Carel is the Principal Investigator of a Wellcome funded groundbreaking six-year project, EPIC Epistemic Injustice in Healthcare (https://epistemicinjusticeinhealthcare.org/ ) held by the universities of Bristol, Birmingham and Nottingham.

One of EPIC’s main goals is to shift the paradigm of healthcare from a top-down, clinician-driven model to one that respects and integrates patients' lived experiences and knowledge. This fosters a more collaborative approach to diagnosis and treatment.

Another key aim is to create resources and frameworks that empower both patients and healthcare professionals to engage more fairly and equitably in clinical interactions. These tools are designed to help healthcare professionals recognize and mitigate their own biases, ensuring that patients' testimonies are taken seriously.

Carel advocates for a transformation in healthcare, where patient knowledge is better listened to and acted upon, in addition to clinical expertise.

She emphasises that patients, especially those with chronic illnesses or disabilities, often have a deep understanding of their conditions, which should be acknowledged and incorporated into treatment plans.

Through EPIC, Carel seeks to develop practical tools to reduce epistemic injustice and promote epistemic justice by providing both a theoretical understanding of, and practical guides to ensure patients' voices are heard and respected in medical interactions.

Sources for article:

Interview with Professor Havi Carel (in September 24)

EPIC project website https://epistemicinjusticeinhealthcare.org

Havi Carel Research Bio - https://research-information.bris.ac.uk/en/persons/havi-hannah-carel

Painting illustrating this article is HOPE by Joan Miró painted in 1946

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