1. Medical Sociology (Sue Ziebland)
2. Science and Technology Studies (Steve Woolgar)
3. Public Health and Health Services Research (John Powell)

Phenomenology of Illness: a Philosophical Account of ‘Patient Experience’
Professor Havi Carel

Phenomenology is a useful methodology for describing and ordering experience. As such, it can be specifically applied to the experience of illness, in order to illuminate this first-person experience and to enable healthcare providers to enhance their understanding of it. However, this approach has been under-utilised in the philosophy of medicine as well as in medical training and practice. This presentation will argue that patient experience cannot be systematically understood without a phenomenology of illness.

This phenomenological approach gives the body a central role and acknowledges the primacy of perception. I present such a phenomenological analysis of illness and show how it could usefully illuminate the experience of illness through a set of concepts taken from Merleau-Ponty. His distinction between the biological body and the body as lived, analysis of the habitual body and novel notion of bodily intentionality are used to analyse illness and pain.

I then discuss the applications this approach could have in medical training and practice. These include narrowing the gap between objective assessments of wellbeing in illness and subjective experiences which are varied and diverse; developing a more useful dialogue between physicians and patients, based on a thick understanding of illness; improving the overall experiences of healthcare; and assisting in ethical training of medical staff.

Presentation slides [pdf]

Experience is not evidence
Professor Jeannette Pols

In this presentation I will explore the intricacies of using the term knowledge of experience, by analyzing two positions in particular: the idea that experience grounds knowledge, and the idea that experiential knowledge is comparable to scientific knowledge. Philosophers and science studies scholars study how experience may be normatively thought of as the source or the grounds of knowledge, and how we may judge the reliability of these knowledge claims. Some sociology of science and some patient activists analyse whose knowledge ‘wins’ in a particular social situation, making knowledge an issue that relates to the power of social groups. The content and ways of producing experiential knowledge is not central in these accounts, but rather its social impact. In both accounts, ‘experience’ gets a different meaning.

I suggest we need a way out if these repertoires of grounding versus effect, or normative epistemology versus descriptive sociology, in order to analyse the knowledge people with chronic disease or handicaps bring to the table. My suggestion is to analyse knowledge as something that is valid and useful in particular circumstances and arrangements, with particular aims and criteria, and is produced by using particular methods. This intricately relates knowledge claims to matters of power, as conflicts between different forms of knowledge are also conflicts between what aims are worthy to strive after, what methods are accepted as the good ones, who has access to the means of creating it, where is it created, and so on. In this view, ‘evidence’ is a particular construct that is proposed and institutionalised in biomedical research and is modelled after the clinical trial. This begs the question of how we may think about the particular knowledge of people with chronic disease. Does it present knowledge that is of the same nature as that of medical researchers, and under what conditions would this be so?

So what are patients experts on? My suggestion is that this is knowledge about living daily life with a chronic condition, with the treatment practices they face, and regimes they take home to adapt to the other concerns they have next to being a ‘good patient’(e.g. being a good husband or father). Their expertise is this practical, daily life knowledge. These can be propositions (know-that), or be embodied in skills, partly tacit (know-how). And it can be highly contextual, such as finding out what to do in this particular situation (know-now).

Discussant: Dr Fadhila Mazanderani

‘Hands off our stories’. Exploring the legacies of patient narratives ‘captured’ for quality improvement
Professor Glenn Robert

Patient narratives have been proposed as an “antidote to interventions, priorities and goals [that] are increasingly dominated by outcomes-driving strategies at the expense of more humanistic approaches to illness care” (Donovan, 2003), with particular value “in situations where clinical or organisational complexity eludes traditional deductive methodologies that rely on reduction by objectification or numerification” (Iedema, 2011).

In this presentation we will trace the legacies of filmed patient narratives over a two year period. The films were initially edited and screened as representations of patient experience in order (partly) to encourage clinicians’ engagement with a quality improvement (QI) project in an acute hospital setting in England. In doing so we will examine the ways that – over time – filmed patient narratives acquired and re-acquired meaning as sources of knowledge for clinical and QI staff.

Drawing on Gabriel’s theory of the ‘narrative contract’ we will examine how the films were composed and screened to establish common grounds for collaborative QI work between staff and patients. We will describe how they were appraised by staff audiences, both for their immediate impact and some two years later. We identified three different ways that the films were being (re)interpreted: as ongoing sources of learning by encouraging critical reflection; as dubious (invalid or unreliable) representations of patient experience; or as ‘closed’ items available as auditable evidence of completed QI work. We will note the various effects on these staff interpretations of (a) social distance, (b) the differential outcomes of the QI work, and (c) changing organisational agendas. Finally, we will consider the wider conditions of patient narrative as a form of QI knowledge with both immediate potency and with fragile or fluid legitimacy over time.

Presentation slides [pdf]

The use of critical ethnography to capture the experience of illness and disability
Professor Trisha Greenhalgh

This presentation will consider how ethnography can be used in the home and community to capture the lived experience of illness. Techniques include ‘cultural probes’ (artefacts such as digital cameras that allow participants to become partners in the ethnography and chronicle their own lives) and ‘go-along interviews’ (in which the participant is invited to take the researcher on a journey and talk as they travel). But there are also ideological choices to be made – between ‘uncritical and ‘critical’ applications of the ethnographic method. Uncritical ethnography focuses on observed behavior and can feed into studies whose aim is to describe and classify – but is (I contend) unable to capture what participants experience. Critical ethnography explicitly questions the discourses and power relationships of research and is oriented to seeing the world as the participant sees it. Just as the use of randomised trials and quantitative surveys implies “a commitment to questions of statistical relevance, objective measurement, generality rather than specificity, population comparisons and the power of numbers to talk about people” (Dourish and Bell, 2011: 62), so the use of critical ethnography implies a commitment to such things as building the human relationships for immersion in a particular case; making power relationships explicit and democratic; negotiating how, when and with whom research findings are to be shared; seeing consent as more than a one–off, procedural issue; and placing the researcher’s own experiences (e.g. efforts by sponsors to influence the research questions and how data are analysed) in frame as part of the research dataset. It also implies, usually if not invariably, that the research is driven by values (for example, underpinned by a concern for social justice and emancipation) and that the researcher cares about the fortunes of particular actors in particular contexts. The implications of this critical perspective on ethnography for health experiences research will be explored.

Discussant: Neil Churchill

Patients’ organisations and ‘evidence-based activism’
Professor Madeleine Akrich
Professor Vololona Rabeharisoa

Over the last two decades, rich and detailed studies have documented the participation of patients’ organisations to biomedical research, and its consequences on the configuration and conduct of collective action associating patients and professionals. These studies have notably pointed to the crucial role played by patients’ as “experts of experience”. Questions remain however on what exactly “experiential knowledge”, which underlies patients’ expertise, is made of. This communication contributes reflection on this issue.

We draw on research findings from a European funded project called EPOKS (European Patients’ Organisations in Knowledge Society) we coordinated these last three years. This project examined patients’ organisations engagement with knowledge and their role in the governance of health in four condition areas (rare diseases, Alzheimer’s disease, ADHD – Attention Deficit Hyperactivity Disorder –, and childbirth) and in four countries (France, UK, Ireland, and Portugal). We address the following questions: (i) how do patients’ organisations turn patients’ experience into knowledge on the conditions they are concerned with?; (ii) how does “experiential knowledge” relate to “credentialed knowledge”?; and (iii) how does patients’ organisations knowledge-related activities contribute to the shaping of health issues and policies they deem important?

Firstly, following Tomasina Borkman (1976), we recall that patients’ experience is not a given: it has to be produced out of “unorganised bits of information” which patients display in their narratives. We provide examples of the variety of tools which patients’ organisations set up for giving shape to patients’ experience: collection and ordering of patients’ testimonies, surveys, speech groups, etc. This work on and with patients’ experience has two main effects: (i) it helps patients to mutually and collectively delineate what is called “experiential knowledge”, e.g. a body of experience-based statements on what their conditions are and what these conditions are the cause of; and (ii) it allows patients’ organisations to speak on behalf of concerned people in medical, healthcare and political arenas.

Secondly, in contrast to the opposition often put forward between “experiential knowledge” and “credentialed knowledge”, we argue that these two sorts of knowledge interwoven in multiple ways. Our observations show that for describing and making sense of their experience, patients rely on “credentialed knowledge” which patients’ organisations contribute to sort out. This does not imply that “experiential knowledge” necessarily aligns onto “credentialed knowledge”. Our contention is that the very wording of experience results from the confrontation of patients’ perceptions of their conditions to a series of statements, some made by other patients, others by professionals. It is this intermingling between different species of knowledge which enables patients’ organisations to suggest a new, and sometimes critical, understanding of “credentialed knowledge”.

Thirdly, we suggest that knowledge is not a mere resource for patients’ organisations, nor is it an end in itself: it is the very object of patients’ activism for problematising their conditions. Through the articulation of various bodies of knowledge, patient’s organisations transform fuzzy complains into issues which call for collective reflection and action: their expertise and legitimacy lie precisely in their capacity to transform experiential knowledge into evidence that re-opens the definition of relevant issues and can be taken into consideration in expert arenas. The expression “evidence-based activism” tries to capture the centrality of this evidential work in the development of contemporary forms of activism.

Presentation slides [pdf]

Discussant: Dr Louise Locock

‘Existence precedes essence’: ageing, self-rated health and the sciences of subjectivity
Dr Tiago Moreira

Self-rated health is a widely used measure in national and international health surveys, mainly because of how it has consistently shown to be a predictor of mortality in various populations. However, despite substantial research into the topic, it is still not clear how a subjective assessment of health can show such a strong and constant association with mortality. This paper, rather than attempting to answer this question, explores instead how the question came to be posed. Part of a wider study on the socio-technical transformation of age and health measurement, the paper traces the genesis and development of self-rated health scales from the late 1950s onwards. I suggest it is possible to identify two overlapping phases in the process of assembling this metric. In a first phase, concomitant with the emergence of US medical sociology, self-rated health was well embedded in attempts to understand and manage drivers of health care demand, particularly amongst those then labelled as the ‘elderly’. Policy concerns about rising health care costs supported the inclusion of this simple, easy-to-collect measurement in community studies, which in turn facilitated its quantification and association with a variety of epidemiological measures. In a second phase, from around the 1980s, a controversy emerged about self-rated health and the role of subjectivity in health maintenance policies and programmes. I further argue that this controversy strengthened a renewed interest in the sciences of subjectivity in health, including helping consolidate the ‘biopsychosocial approach’. The paper concludes by discussing the key normative and epistemic uncertainties that still destabilise subjective health as an object.

Crowdsourcing for quality improvement? Questioning the rise of rating and recommendation sites in healthcare
Dr Samantha Adams

Social media applications have been hailed as ‘the wonder drug for healthcare’ and ‘the perfect storm of patient engagement’. Rating and recommendations sites, where patients and their families share experiences with the and review or grade their care, have particularly been promoted for their potential to ‘democratize’ quality control and improvement processes by making institutional performance more ‘transparent’. But the actual role that these websites play in improving quality and transparency has (in many cases) yet to be demonstrated. Moreover, their development and use has not been welcomed equally by the numerous actors in the healthcare field. Drawing on a study of three Dutch websites (one each for rating institutions, physicians and treatments), I argue that the sites actually potentially obscure transparency and democratization. I also raise a number of questions about the (ethical) consequences of opening out the traditionally protected space of the individual medical encounter to the public, even in the interest of improving the quality of care on the whole.

Presentation slides [pdf]

Discussant: Dr James Munro

From experience to quantification to co-production: reflections on patient reported outcomes in an online patient community
Dr Paul Wicks

While the Internet has been used as a means of qualitative narrative exchange for 30 years or more, the past decade has seen a movement towards other forms of data. In the mid-2000’s, patient reported outcome measures (PROMs) were co-opted by patient advocates on the Internet and moved from research measures that described groups to tools of the quantified self which enabled greater insight of the patient journey. With the addition of social networking and crowd-sourcing, patient-reproted data can now be aggregated at scale to address questions that patients have which remain unaddressed by the medical system: Is my experience normal? Is what I’m doing working? Is there anyone else out there like me? What can I expect for the future? Where such questions have been limited to small and informal discoveries they have gone mostly unnoticed, but when patients with serious conditions such as ALS or MS began applying such questions to the sanctified realm of the double-blind randomized control trial (RCT), the world sat up to take notice. Today participant-lead research is becoming a new entity on the pyramid of evidence, short-circuiting traditional research infrastructure and perhaps even being a source of embarrassment to those who have baby-stepped towards “engagement with patients”. Instead some patients have shown that they don’t have much need for researchers and through online communities, open access, crowdsourcing, and cognitive surplus they can attempt to solve scientific questions by themselves, blurring the line between patient, participant, and investigator. Ultimately a hybrid approach is needed whereby researchers can bring their objective view of a topic, their methodological rigor, and their funding mechanisms to the table with patients bringing their own expertise in the lived experience of disease, their ability to active networks, and the authenticity of their experience in making compelling arguments for change so that true co-production harnesses the best of what both groups have to offer.

Presentation slides [pdf]

Doing Speculation to Curtail Speculation
Dr Alex Wilkie

This paper explores the speculative practices of a team of interaction designers engaged in identifying and defining a novel healthcare technology to support the management of type-2 diabetes. Drawing on ethnographic fieldwork conducted within the organisational context of a multinational microprocessor manufacturer, we describe how an ‘in-home’ interview conducted with an elderly man managing type-2 diabetes resourced ‘ideation’ within a ‘brainstorm’ session. Whereas the profusion of literature on creativity attributes the production of novelty to the cognitive capacities of individuals – acting alone or in groups – we work with Whitehead’s generic version of creative processes to describe how the ‘event’ of the brainstorm operated to curtail and constrain the extensiveness of speculation. Taking brainstorming as a speculative method, we show how there was both an attempt to access the not-as-yet ‘useful’ or instrumental whilst systematically removing, occluding or screening out other more non-sensical, troubling or uncomfortable implications, such as extraterrestrial implants, aimless disease mismanagement, or the affects of grieving for a long-term partner lost to cancer. In other words, the speculative – idiotic or parasitic – dimensions of their ‘data’ were ‘neutralized’ by the very speculative practice of their methodology. This we analyse by way of the ‘what’ of a brainstorm event, where the problem addressed by the method is pre-ordained, and the ‘how’ of a brainstorm event, where we consider the ways in which elements derived from the interview, notably mediated by the material properties of post-it notes, failed to enter into the eventuation of the brainstorm. We end by speculating on the limits and parameters of speculation.

Discussant: Professor Steve Woolgar

Experience in/as a Platform
Kaiton Williams

In this presentation, I examine how personal informatics and self-tracking tools are taking account of experiences from the quotidian to the sublime, and how they incorporate and contribute to the shifting personal and political meaning of our bodies, our health, and our sense of our possibilities. I ground my discussion of how these systems work to frame experience, subjectivity, and self-understanding through a multi-year auto-ethnographic project of self-tracking and self-modification. Throughout the presentation, I will use insights from that project to reflect on the tensions and experiences of being enrolled in, while simultaneously wrestling with, embedded ideologies of how best to monitor and manage one’s health and person.

I will also discuss how my widening inquiry into these tools and practices drove me from solitary practice and into a community of others who were seeking a similarly subjunctive understanding of the promise and everyday contours of technologically guided, deliberate experience. In this account, I consider the Quantified Self community as one with porous and amorphous boundaries—an evolving effort by individuals to jointly found and share their own anthropologies. In considering this move into a wider community, I reflect on how the effort to gain control of my own body and consumption affected me not just physically but also politically. I argue that these personal tracking systems, and the community around them, might be forming the basis for a more publicly-engaged human experience; one that cannot simply be reduced to a search for numeric truth, small matters of concern, or an external locus of control and meaning, but one that uses that quest for understanding as a basis for building empathy and a universal register for speaking to the large matters that concern us all.

Presentation slides [pdf]

Interviewing the brain? What happens to experience in (neuro)market(ing) research practice
Dr Tanja Schneider

Consumer experience has been and continues to be central to many forms of market(ing) research that aims to understand and predict consumer behaviour. Over the past decades commercial and academic market(ing) researchers have studied experience through a range of different methods such as questionnaires or focus groups. More recently some have turned to the growing field of neuroscience and its technologies to understand consumers. One key promise that many so-called neuromarketers or consumer neuroscientists share is the suggestion that biometric and neuroscientific technologies (e.g., eye-tracking, fMRI, EEG etc.) offer superior insights into consumer behaviour than traditional market research techniques. In this talk I explore how consumer preferences are achieved in market research and in neuromarketing research practice in particular. Reporting from ongoing fieldwork with commercial and academic neuromarketers, I argue that an ontological respecification takes place in experimental practices (and beyond) which enacts the brain as an important market actor.

Discussant: Dr Malte Ziewitz, Cornell University