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.