Wednesday 21 February 2024

The Patient Experience Library

In this post, Havi Carel interviews Miles Sibley about the Patient Experience Library.

Havi Carel (HC): What is the Patient Experience Library? 

Miles Sibley: The Patient Experience Library acts as the national evidence base for patient experience and engagement. Operating as an online research database it contains studies and reports from sources including government bodies, patient voice organisations, health charities, academic institutions and policy think tanks. The repository runs to tens of thousands of documents, and more are being added all the time.  So the library also works on knowledge translation – helping policymakers, clinicians and patient advocates to understand what is in the research, and how to use it.  

HC: Why did you set it up? 

MS: We set up the library after realising that an NHS aiming to be both patient-centred and evidence-based actually had no coherent evidence base for patient experience.  Health services draw on multiple medical research databases to inform policy, professional training, clinical guidelines and more.  But there was no equivalent for patient experience.  So we built the library to plug the gap.   

HC: What are the barriers to accessing data on patient experience?

MS: Firstly, the data is a mess.  It comes from the Friends and Family Test, complaints, national patient surveys, the local Healthwatch network… All this and more is published across multiple websites and can be very hard to keep track of. 

Secondly, there is no organisational memory.  Government funded “patient voice” initiatives began with the Community Health Councils in the 1970s. Those were succeeded by Patient and Public Involvement Forums, then by Local Involvement Networks, before the current iteration, Healthwatch.  All gathered large volumes of evidence on patient experience, but it was never properly catalogued and preserved. So as each initiative shut down, its entire body of knowledge went with it.

Thirdly, there is no research prioritisation at the national or strategic level.  While medical research is (at least to some extent) geared towards reducing duplication and opening up new areas of knowledge, patient experience research is, essentially, a free-for-all.  There is extensive waste and duplication, along with large gaps – particularly when it comes to marginalised groups such as minority communities, or people with rare diseases.


One of the posters
by the Patient Experience Library


HC: Why do you think it's important to overcome these?

MS: For reasons of equity and justice.  

For example, the NHS promises equal access to its services for all citizens.  But the reality is that the poorest people in the poorest communities always have the poorest health, and usually have the worst access to services.  Statistics on mortality and morbidity can help us to understand some of the consequences.  But to really understand health inequity, we need to hear from the people most affected by it.

Another example:  inquiries into avoidable harm (eg from pelvic mesh, or deaths in maternity services) always tell of patient concerns being deflected and denied.  Medical records are respected and trusted, while patient feedback is dismissed as "anecdotal evidence".  This deep-seated epistemic injustice lies at the heart of harm.

One more: medicine has a fantastic learning infrastructure.  Clinicians are given world class learning support though professional training, clinical guidelines, practice protocols, diagnostic aids, conferences and journals.  But people charged with hearing "patient voice" (PALS teams, complaints handlers etc) have no professional qualifications, no analytics, and no professional forums.  Their learning support is deemed unimportant because lived experience is also deemed unimportant.

HC: What do you hope the patient experience library will achieve?

MS: We see a double standard in evidence-based practice: medical evidence is cherished and respected, while patient experience evidence is considered an optional extra.

So we want to end the double standard. Our steps towards that include:

  • Building the evidence base. The library is an open access repository of evidence on patient experience: the only one of its kind in the world. Medical research databases are taken for granted – we want to show that a patient experience research database is equally feasible.
  • Building analytics.  Patient experience evidence doesn't have to be incomprehensible.  Our surveys tracker, for example, puts key datasets for English NHS Trusts all in one place and cross-references key themes to aid understanding.
  • Mapping the evidence.  Patient experience research should not be a free-for-all, with some communities permanently excluded.  Our evidence mapping shows that it is possible to lay the foundations for better prioritisation and higher value research.

Ultimately, we are on a mission to get patient experience evidence taken as seriously as medical evidence.  We are showing how that can be done.  Our work is both a challenge and a helping hand to an NHS that says it wants to be patient-centred.


Miles Sibley is a co-founder and Director of the Patient Experience Library. As an advocate for healthcare services that are both person-centred and evidence-based, he has served on the Board of HQIP, and is currently a Non-Executive Director with Care Opinion. He is the author of Inadmissible Evidence and has written numerous articles on patient and public involvement for the BMJ and others.

Wednesday 14 February 2024

Reservations about Epistemic Injustice

The concept of epistemic injustice undoubtedly applies in mental healthcare contexts, because people get ignored in these contexts as sources of knowledge when they shouldn’t be. As a result, the concept is frequently invoked, especially perhaps in the overlap between academia and service-user advocacy. Still, I want to express two reservations about it.

Identity prejudice

The first is about the connection between epistemic – specifically, testimonial - injustice and ‘identity prejudice’, which occurs when someone’s testimony is discounted because of a prejudice against a group they belong to. Fricker made this connection in her book, which of course launched the concept: epistemic injustice occurs when a ‘negative identity-prejudicial stereotype’ (p. 35) undermines credibility.

But does it only occur then? Suppose my teacher dismisses my contributions to class, whether they are knowledgeable or not, while other students’ similar contributions get a fair hearing. That sounds like injustice, and presumably if it’s injustice of any sort, it’s epistemic. But surely the teacher may just dislike me personally, not because of any group I belong to. Fricker acknowledged this objection in a follow-up piece, while maintaining that negative stereotyping is the core case. But is it? Who knows if negative stereotype-based epistemic injustices are more common than ‘merely personal’ ones? There are, after all, a lot of people. 


Personal and identity prejudice


Negative stereotype-based epistemic injustice is morally especially troubling. But is it thereby the core of the phenomenon? Consider the notion of a racially aggravated offence. Here, group-based hostility compounds an independently specifiable offence such as assault. Applying the analogy, the ‘merely personal’ case looks epistemically just like the negative stereotype-based case, i.e. I am undeservedly discounted as a source of knowledge because the teacher’s evaluation of my epistemic standing tracks a feature (her dislike of me) that is epistemically irrelevant. 

So the negative stereotype-based case comes out as racially (or whatever) aggravated form of a core epistemic phenomenon that’s independent of stereotyping. It’s probably a verbal choice whether we relax the link between epistemic injustice and prejudice or (my preference) relax the link between prejudice and group membership. The point is that the same injustice occurs whether negative stereotyping is present or not.

Borrowing authority

My second reservation is based only on a personal impression, that some campaigning literature is seeking to borrow authority from philosophy – whatever authority it really has to offer - by affixing the word ‘epistemic’ to the word ‘injustice’. But even where mental health professionals fail to listen to service users when they should, it’s not always a case of epistemic (testimonial) injustice: that concept only applies when utterance aims to secure belief, and service users say things to mental health professionals for expressive reasons, or because they need the experience of being listened to. 

Moreover mental healthcare is arguably a context for multiple injustices unrelated either to knowledge or to listening (or failing to listen) - e.g. involuntary detention in hospital. My worry is that the uncritical overuse of an (in its place) useful concept may distract us from thinking carefully about potential non-epistemic injustices.


Edward Harcourt
Edward Harcourt is Professor of Philosophy at the University of Oxford. 
His research interests include child development, ethical dimensions of psychoanalysis and psychotherapy, and the philosophy of mental health and mental illness. 
Some of the ideas in this post are discussed in his article in the Journal of Medical Ethics.


Wednesday 7 February 2024

Credibility attributions in healthcare

In this post, Kathleen Murphy-Hollies interviews Carme Isern Mas on a new exciting project, on the cognitive bases of epistemic injustice in healthcare



Kathleen: Can you tell us a little bit about your project?

Carme: This is a project funded by a Grífols Research Grant in Bioethics from the Fundació Víctor Grífols i Lucas. The main aim of this project is to explore whether people with somatic and psychiatric conditions are given less credibility than their healthy counterparts due to identity prejudice, and if so, to investigate under which conditions this is the case. To achieve this, we plan to use experimental methodology, particularly through vignette-based studies. 

In particular, we ask whether epistemic injustice in people with clinical diagnoses is influenced by the effect of the label of the diagnosis, the epistemic privileging of scientific and medical evidence, and the effect of the clinical context. We hope that this will allow us to complement the existing empirical evidence gathered through interviews, conversation analysis and questionnaires, among other methods.


Kathleen: Is your project interdisciplinary? How do you think that is helpful/valuable?

Carme: Yes, our project is interdisciplinary, and we believe this approach adds significant value to our research and to the broad discussion around epistemic injustice in healthcare. In particular, we aim to contribute to this philosophical and ethical discussion by exploring one of its main empirical claims, namely, that the testimony of people with somatic and psychiatric conditions is given less credibility than that of healthy people because of an identity prejudice. 

Therefore, our project aligns with the research programs of experimental philosophy (x-phi) and, more specifically, experimental bioethics (bio-x-phi), both deeply interdisciplinary. To that end, our team is composed of qualified researchers, including Alfred Archer, Ivar R. Hannikainen, and myself, with expertise in applied ethics, moral psychology, bioethics and experimental methodology.




Kathleen: What do you hope the project will accomplish/change?

Carme: There is a need for empirical research that studies the scope of epistemic injustice towards people with medical conditions and the factors that contribute to it. This project aims to fill this gap by conducting several studies based on vignettes that manipulate an agent’s kind of medical condition, their specific diagnosis, or the context in which they share their testimony, among other things. 

By examining the impact of these manipulations on credibility attributions, we aim to shed light on the role of negative stereotypes in shaping such attributions. In addition, this project might help us understand how credibility attributions vary in different contexts, including medical and non-medical settings, and across different psychiatric conditions. The results of this research might have implications for healthcare professionals, policy makers, and other stakeholders interested in promoting more equitable and fair practices in healthcare. 

By highlighting the mechanisms underlying epistemic injustice toward people with medical conditions, this study can inform the development of interventions aimed at reducing bias and improving the quality of care for these individuals.


Kathleen: What are the future plans for the project?

Carme: In addition to conducting studies, we aim to disseminate our findings through academic publications, conferences and other relevant platforms. We might also explore potential collaborations with healthcare professionals and institutions to include their valuable feedback and insights in our research.



Carme Isern Mas is an assistant professor at the University of the Balearic Islands, specializing in moral psychology, and applied ethics. 

Her research interests lie in topics such as blame, empathy, moral motivation and self-deception. She is also interested in the bioethics of mental health and the ethics of fame. 


Wednesday 31 January 2024

Is there a right to silence?

Silence is often perceived as politically harmful and something that has to be broken. But what if silence can also be politically beneficial in democracies and we have good reasons to protect our right to stay silent?

Specifically, is speech always better than staying silent in situations of compelled speech and possibly compelled lies due to social pressure? Is speech better than silence when the audience might misinterpret or deconstruct what we way?

In our article (open access in Philosophical Quarterly, 2024), Dan Degerman and I address the political importance of being able to hold to one’s silence and we argue that a democratic right to silence can be motivated by politically relevant epistemic reasons.

Generally, the right to stay silent is seen within the legal context as the right one has to protect oneself against self-incrimination. However, we can broaden this and argue in favour of the right to silence as the entitlement one has to stay silent, either by not speaking or by not speaking about something in particular.




The right to silence so formulated can have many benefits, but specifically we can focus on some epistemic benefits silence can bring. The first is that silence can prevent the risk of jeopardising the individual’s credibility and spreading falsehood while undermining the notion of truth. This is the case when someone might be compelled to lie in public. These situations can be present due to political, legal, and social pressure. Cases of this kind are show trials, but we can also imagine contexts related to free speech on the internet or in public spaces. A robust right to silence can allow individuals to adhere to it while avoiding the epistemic harms that can be generated by publicly admitting what is known to be false

The second benefit is the one of preventing the misconstruction of what someone might say when they are faced with an audience that pressures them to speak. This case can be seen in cases of compulsory representation when someone is asked to speak in quality of representing a given minority and whatever is said risks being misinterpreted. The epistemic damage in these cases is not limited to the epistemic agency of the speaker but also that of the group they are taken to represent. Again, in the context of internet and speed news, it is not difficult to imagine a case in which someone’s option might be misconstructed or re-interpreted for given purposes. As we argue, in both these cases silence is a better option.

How can we implement the right to silence? The answer is not simple and many steps have to be taken politically and legally. However, we believe that a first step can be seen in making people comfortable with their right to be silent in situations of pressure or in which their status as epistemic agents might be compromised. And our paper aims to guide them to do so.


Francesca Bellazzi is Teaching Fellow in Philosophy in the Department of Philosophy, Theology and Religion at the University of Birmingham and Honorary Visiting Fellow in Philosophy at the University of Bristol.

Francesca works in the metaphysics and philosophy of science and in applied philosophy and ethics.

Wednesday 24 January 2024

Distributive Epistemic Injustice

Imagine on the first day of class your professor announced that only the shortest 50% of students may attend class. The tallest 50% would be barred from class, but would still be responsible for the same material. You would likely be outraged by this policy—regardless of whether you are tall or short. That outrage would be justified. Your professor would be discriminating against some members of the class for entirely arbitrary reasons. 

Obviously, the example is silly—few professors would try such a stunt. But history has many more serious examples. University co-education in the USA started in 1837, but Ivy League schools continued to exclude women into the late 1900s. Many primary and secondary schools in the USA used to be legally segregated by race, and even now many remain de facto segregated.



Cases like these illustrate “distributive epistemic injustice.” Distributive injustice involves the unfair, undeserving, or otherwise unjust distribution of “epistemic goods.” Epistemic goods are good things that are involved with our ability to know as individuals and communities. Epistemic goods are things like true belief, knowledge, understanding, access to information, standing to speak, freedom from censorship, and other things as well.

Epistemic goods are clearly of great practical importance—knowledge is power, as they say. But epistemic goods can also give meaning and significance to our lives. If you’ve ever given in to your curiosity and discovered something really interesting or if you’ve ever had a sudden insight into an experience of yours, then you’re familiar with the significance of epistemic goods. That’s why distributive epistemic injustice is such a big deal—it distributes these important things in problematic ways. 

Some cases of distributive epistemic injustice are easy to spot, like segregating students on the basis of gender or race (or height!). But others are more subtle. In our paper, we argue that language use within a community can cause distributive epistemic injustice. 

Sometimes members of a community come from different parts of the world but use a common language—say, English—to communicate with one another. Using a common language facilitates communication and, in that way, is good. But the use of a common language may lead to injustice. For instance, if some members of the community are native speakers of that language and others aren’t, then only some members face the difficulty of learning the language and using it in an environment they may be less comfortable in. If some members are taken less seriously because they speak the common language with “an accent”, then they are discriminated against for an arbitrary reason. And if only a subset of the community is able to set the norms for “proper” use of the common language, then other members of the community are being denied equal access to the epistemic goods inherit to that process. 

As with all forms of injustice, there’s no “one-size-fits-all" response to distributive epistemic injustice. But we think naming the phenomenon is a first step towards repairing it. 


Peter Finocchiaro and Timothy Perrine wrote this post. They are also the authors of the paper, "Linguistic justice in academic philosophy", for which they were awarded the Lex Academic® Essay Prize for Understanding Linguistic Discrimination. The paper is now out in Philosophical Psychology.


Wednesday 17 January 2024

Epistemic Injustice: Caution and Complexity

Epistemic injustice has become a ‘hot topic’ in philosophy since the 2007 publication of Miranda Fricker’s book. Project EPIC is one product of the now-enormous field of epistemic injustice studies, which extends into other academic disciplines. This industry and interest, while welcome, brings with it the usual hazards of concepts that ‘go viral’. Over time, rich concepts are reduced to slogans or single-sentence definitions. A specific vocabulary becomes widespread but decoupled from its underlying theoretical machinery (think of Kuhn on ‘paradigm shifts’).

Academic fashions are unavoidable, as are trade-offs, such as that between the complexity and the communicability of a concept. Conceptual uptake is to be encouraged where it is productive: we should not want to lock ourselves into our specialist silos. Moreover, good work can often be done with simple versions of complicated concepts. The challenge is to use concepts, like epistemic injustice, while also maintaining sensitivity to complexity, detail, and nuance.





With that in mind, here are some problematic tendencies to note in epistemic injustice studies:

  1. the tendency to use the term ‘epistemic injustice’ in over-generalised ways to mean ‘anything epistemically bad’. Granted, epistemic injustices are heterogenous, but there are lots of epistemically bad things in the world. Not all of them are epistemic injustices. Other normative concepts and evaluative vocabularies are available, which may better fit different cases. Defaulting to epistemic injustice might obscure the normative details of certain cases. We must use the right concepts for the task at hand, not just the ones we are have become accustomed to using.
  2. a tendency to use overly simplistic accounts of the nature, causes, harms, and wrongs of epistemic injustice. Negative stereotypes, for instance, are a cause of testimonial injustice, but not the only one. Stereotype-centred accounts are sometimes right for the case at hand, but if used carelessly can disguise the many causes of epistemic injustices. Similarly, while many hermeneutical injustices fit Fricker’s original account of the lack of relevant interpretive resources, others involve the presence of distorting resources. Other cases will involve both lacks and presences of different kinds of resources. These sorts of distinctions are vital to capturing the particularity of different cases.
  3. a tendency to rely on under-articulated accounts of epistemic injustice. It is now standard to define an epistemic injustice as ‘a wrong done to someone specifically in their capacity as a knower’. However, this gloss sets up complicated questions – about the nature of the wrong, for instance, or what it means to be a knower. Sometimes, a gloss is enough, but there are many cases where the detail really matters. Many details of Fricker’s original account are not taken up, including in cases where they would help (such as the idea of ‘economies of credibility’ or her virtue-epistemological framing of testimonial justice).
  4. a tendency to default to the original 2007 Frickerian framework without considering its subsequent amendments (such as the idea of structural testimonial injustice) or criticisms of the original Frickerian account or the alternative forms of epistemic injustice (such as contributory injustice) offered by other scholars. Granted, the epistemic injustice studies scholarship is enormous, and, if the original account will do the work, that’s fine. But there is much more in epistemic injustice studies than the 2007 book.

In describing these four tendencies, I am not impugning work in epistemic injustice studies. The tendencies indicate hazards to recognise and avoid. 

Here are some others, including problems particular to studies of epistemic injustice in relation to illness and healthcare:

  • Doctor-bashing. Epistemic injustice within healthcare is a clear problem and there are important criticisms to make of healthcare systems. However, there is a temptation to put the concept in the service of ‘doctor-bashing’. Sometimes, individual healthcare practitioners are at fault. Even where they are, though, there can be complex causes, many involving major structural problems of healthcare systems like the NHS. Rushing to ‘bash’ individuals risks obscuring the messy personal, interpersonal, and institutional realities of healthcare practice.
  • ‘Grab-bag’ approaches. Epistemic injustice as a concept clearly resonates with many people, who are then tempted to ‘grab’ the concept and immediately put it to work. However, using a concept properly means respecting its nuances and the constraints on its use. Contrary to some claims, epistemic injustices can, but need not, be systematic or lead to dehumanization. Over-defining a concept is one consequence of grab-bagging. This is not to say that only trained epistemologists should be allowed to use the concept. But it does mean that concepts, like tools, must be used with due care.
  • Contesting claims. Many people experience epistemic injustices in the course of their lives. As Fricker emphasises, the concept helps those people to recognise and understand these kinds of injustice. However, not everything that one calls an epistemic injustice is an epistemic injustice. One can interpret an encounter as being epistemically unjust when it is not. It is not an epistemic injustice, for instance, if a healthcare practitioner does not automatically believe the patient’s own interpretation of their symptoms. There may be epistemically good reasons for their doing so. Questioning someone’s interpretations of their experiences is not necessarily epistemically unjust. After all, interpretations can be and are appraised – as plausible or implausible, strained or sensible, and so on. Moreover, interpretation is often be a shared task, not something a person does by themselves and then reports to others. Now, contesting claims of epistemic injustice is a delicate task. However, we will need to get better at it as the concept of epistemic injustice becomes more widely used.
  • Lived experience. Epistemic injustice is often used in conjunction with the popular concept of ‘lived experience’. Unfortunately, that term is too often either undefined, underdefined, or defined in banal terms – as, say, ‘experience from the first-person perspective’. Definitional vagary is often accompanied by a tendency to draw further, very contestable epistemological claims. For instance, having ‘lived experience’ is often interpreted as a conferral of expertise. But expertise involves social roles, systems of training and accreditation, and a defined institutional context for one’s conduct. In other cases, ‘lived experience’ is asserted or implied to be something others must accept, as if being epistemic just to someone entails a generalised policy of credulous deference. Epistemic life is too complex for that. It is a matter of contexts, roles, trust and distrust, uncertainty and doubt, – of interaction, discussion, questioning, and delicately structured activities of criticism, affirmation, challenge, clarification, agreement and disagreement. We ignore all this by taking epistemic justice to involve little more than nodding along to whatever one hears.

These tendencies and challenges can all be resisted. It is perfectly possible to use the rich conceptual resources of epistemic injustice studies in ways that honour the moral and epistemic complexities of life. In the case of healthcare, such carefulness matters all the more. Much good work remains to be done – if one is careful, rigorous, and respectful of the messy complexity of our concepts and, indeed, our lives.


This post is by Ian James Kidd
Kidd is associate professor in the Department of Philosophy at the University of Nottingham and investigator in project EPIC. Kidd has a variety of research interests, including phenomenology, epistemology, feminist philosophy, and the philosophy of healthcare.


Wednesday 10 January 2024

When is dismissing a report an act of injustice?

There is a fable by Aesop called The Stag and the Fawn. The stag scares the rest of the herd with his stamping and bellowing but is terrified by the hound. Aesop tells us that this is a story about courage and cowardice but it can also be seen as a story about power relations in a group. The stag can afford to terrorise the other deer because he is more powerful and more highly respected than they are.

 

The Stag and the Fawn by Aesop  

A STAG, grown old and mischievous, was, according to custom, stamping with his foot, making offers with his head, and bellowing so terribly that the whole herd quaked with fear of him; when one of the little fawns, coming up to him, addressed him thus: Pray, what is the reason that you, who are so formidable at all other times, if you do but hear the cry of the hounds, are ready to fly out of your skin for fear?

What you observe is true, replied the stag, though I know not how to account for it. I am indeed vigorous and able, and often resolve that nothing shall ever dismay my courage; but alas! I no sooner hear the voice of a hound but my spirits fail me, and I cannot help making off as fast as my legs can carry me.

Moral: The greatest braggarts are the greatest cowards.

(Aesop's Fables, 1881, WM.L. Allison, New York)


Consider another story featuring a fawn, mother and father deer, and a mountain lion. Watch the video below, which was produced by Squideo from a script I wrote in order to illustrate what epistemic injustice is.




The Fawn and the Mountain Lion 

When is dismissing another's report an act of injustice? 

Father deer (to Mother Deer and Fawn): It’s late let's go to the lake to get some water before it gets dark.

Fawn (eyeing an acorn in the bushes): Wow I would love to gobble that up! (spotting a mountain lion): Oh no, never mind the acorn! 

Fawn (running to catch up with Mother and Father Deer down the lake): Mommy Daddy I just saw a huge mountain lion behind the bushes! We have to go, it is not safe here!

Father Deer (sceptical): If there was a mountain lion behind the bushes I would have heard the steps… you must have imagined it.

Mother Deer (concerned): I am not sure we should stay. Shouldn't we listen to Little Fawn and get back to the herd? Fawn has never lied to us before! 

Father Deer (in a patronising tone): Calm down, young ones don't distinguish reality from imagination and they always try to draw attention to themselves. (then smiling to Fawn) Why don't you get some water little Fawn, you will be thirsty otherwise! This water is delicious, so fresh!

(Mountain Lion attacks Father Deer and bites his the leg but is chased away by Owl descending on the scene with loud screchees)

Mother Deer (to Father Deer): Are you okay?

Owl (to the viewers): We sometimes dismiss a report when we don't trust the speaker due to some negative stereotype but in dismissing what the speaker has to say we pay a high price. We reject information that can be valuable to us.

Mother Deer: You are right wise owl.  In our herd, females and fawns are never listened to but little Fawn recognizes a mountain lion when he sees one! To dismiss him is not just risky, it is an injustice! He should not be silenced when he has something to say.


In this story, the fawn sees a mountain lion and warns his father that there is danger but is not believed. The reason why the fawn is not believed is important: the fawn is not known for lying, being unreliable, or seeking attention, as his mother points out. However, his father assumes that the fawn's report is not something worth acting upon, based on the assumption that fawns are likely to confuse reality with imagination and to draw attention to themselves. 

As the dismissal of the fawn's warning is motivated by stereotypes usually associated with the young, it is a case of epistemic injustice. Not an isolated case either: mother deer reflects bitterly on the fact that in a very hierarchical society like theirs, the views of fawns and females are often openly disregarded, whereas the views by the dominant males are taken seriously. What are the effects of this?

In the story we see two types of effects. First, the fawn and his mother are saddened and disappointed by the deer's lack of consideration for what they have to say. We can imagine the fawn deciding not to warn his herd in the future for fear of being ignored and ridiculed. We can also imagine the fawn internalising his father's criticism and coming to consider himself as unreliable.

Second, father deer, who ignores the warning, is attacked and wounded by the mountain lion, who runs away only when the owl screeches loudly causing a commotion. Ignoring the warning caused him harm as he could not avail himself of important information that would have prevented the mountain lion's attack.

The story is so short that there is no time to explore the further consequences of the event and the development of its characters. However, it shows some interesting features of epistemic injustice, including the pervasive and harmful nature of unquestioned stereotypes and the fact that it harms the vulnerable person whose report is dismissed but also, more subtly, the powerful person who dismisses it.




Young people are often thought to be lazy, immature, lacking resilience, and seeking attention. They are often called "snowflakes" and "drama queens" in the press. These are not harmless stereotypes as they may affect the likelihood that we listen to what they have to say and take their testimony seriously. Their capacity to acquire and share knowledge is even more severely challenged when they experience mental health problems, as their reports may be taken to be a product of their illness as opposed to a reflection of their experiences.

This is what interests me about EPIC, our project on epistemic injustice in the healthcare context: how we can make sense of the dismissal of young people who experience mental health difficulties, and how we can stop it.


This post is by Lisa Bortolotti, who is a Professor of Philosophy at the University of Birmingham and an investigator in EPIC. Among other things, Lisa creates and gathers resources to bring philosophy to everyone at The Philosophy Garden, where you find the video of The Fawn and the Mountain Lion and other videos on a number of timely issues that deserve attention.


Wednesday 3 January 2024

Eleanor Byrne joins EPIC!

Eleanor Byrne will join project EPIC in 2024 as a research fellow in the Philosophy Department at the University of Birmingham. Here she tells us about her research and her interest in epistemic injustice.


Ellie Byrne


Hi Ellie! What are your main research interests?

Hi! I’m a philosopher working mainly in the philosophy of medicine and psychiatry. Within this, I focus primarily on the emotions and the types of medical conditions where there appear to be strong affective components that are not very well understood. 

My PhD focused on fatigue syndromes, and my first postdoc in Sweden focused on Long Covid. I have since been working a little bit on non-epileptic seizures. This understanding gap about the affective lives of patients relates to a host of scientific and social issues which I seek to unpick philosophically. 

Often with tools from phenomenology and the enactivist tradition under my arm, I try to develop a more complex and dynamic framework for understanding the emotions in medicine. My first explicit attempt at that can be found here. I also do a little bit of work on grief, emotion regulation and narrative.




Why do you think it is important to study epistemic injustice in healthcare?

A consistent theme in my own research is how lack of understanding about the emotions in illness causes a significant epistemic burden for patients. For instance, Long Covid patients with anxiety and depression symptoms are often stuck trying to arbitrate between competing explanations about what causes their symptoms, which nonetheless do not seem fully satisfactory. Uncertainty and confusion about one’s emotional life also brings challenges for one’s self-concept: is this the virus or is it me? Who am I now? This epistemic burden relates to all manner of epistemic injustices in healthcare which deserve careful study.

What I find exciting about the study of epistemic injustice in healthcare is how it is progressing: it’s incredibly encouraging to see new distinctions and concepts are coming to fruition that enable us to better capture a subtle dynamic or problem that has long caused significant harm and suffering. I think there is remarkable ameliorative potential, as well as philosophical interest, in the study of epistemic injustice in healthcare.


What are you working on right now?

I’m currently working on a newer concept intricately connected to epistemic injustice: affective injustice. These are injustices that relate to how a persons’s emotions are given (or denied) uptake by others. Uptake failures generally reflect credibility deficits. For instance, the anger of a woman will be given less uptake than the anger of a man because being a woman affords her less credibility.

I am developing a framework of affective injustice that is sensitive to not only discrete emotions like anger, but also to longer-term and diffuse affective experiences like moods, malaises and existential feelings. These affective experiences are common in illness, and failures to give such experiences uptake is responsible for a significant amount of suffering, alienation, shame and self-concept distress. I hope that this work can be a useful part of the wider project goal to develop ameliorative strategies for epistemic injustices in healthcare.