In search of experiential knowledge

Abstract

In recent years, the concept of “experiential knowledge” has increasingly been used to characterize the distinctive contribution patients make to decision-making in the health field. Even though it seems well-nigh impossible to characterize it precisely, there is no doubting its significance for decision-making contexts ranging from the individual to the political. Since individual experiences of any condition or treatment differ widely, whose experiences come to constitute “knowledge”? In this paper, I argue that, rhetoric notwithstanding, numerous constraints “filter” the experiences which come to function as “experiential knowledge”. Looking to the future of health care, likely to be marked by growing inequalities, I suggest that a reflection on the notion of experiential knowledge leads to two challenges for social scientists.

Keywords:

• experience
• knowledge
• health care
• filtering mechanisms

What do sick people know?

Twenty-five years ago, psychiatrist and anthropologist Arthur Kleinman published his recording of part of a clinical encounter between a physician and “Mrs Flowers”, a black 39-year-old single parent of five children (two of them pregnant teenagers, one in prison) whose man friend had recently been killed in a fight and whose partially paralysed mother lived with her. Mrs Flowers feels unwell, the physical symptoms she tries to describe – sleeplessness, headaches – are fused with dreams of her friend’s death, feelings of inability to cope, the general state of her life. She tries to present them as a single whole, which is how she experiences them. Her physician is willing only to hear “hypertension”, to change her medication and to recommend a low-salt diet. This patient is struggling to provide an account of her illness which her physician is unwilling to hear (Kleinman 1988).

Kleinman’s text points to two issues, both of which have intrigued social scientists (of different persuasions) for many years. One relates to Mrs Flowers’ attempt to express herself: to articulate her subjective knowledge of her own body’s (mal)functioning. Such expressions of embodied subjectivity, whether in words or actions, are the stuff of phenomenologically inspired sociology and anthropology (e.g. Csordas 1994). The other relates to the distinction between the perspective of people who are sick or disabled and that of the people who treat or care for them. As far as the latter is concerned, for half a century, anthropologists have used the term “emic” perspective to categorize attempts at looking at the world from within a distinctive community, life world or culture. Introductions to the field of medical anthropology are replete with references to emic and etic perspectives, referring to those who suffer and those who treat, respectively. So if we focus on the “emic” perspective, specifically on the perspective of people coping with ill health or disability, what do we find? Or perhaps better put, how have social scientists characterized what they found?

A decade ago, Lindsay Prior argued that through the 1980s and 1990s, a shift had taken place in the status sociologists accorded this “patient perspective” (Prior 2003). Prior claims that in attempting to articulate and interpret the perspective of the patient, sociologists had modified the terms they used. What had previously been referred to as “lay health beliefs” had gradually evolved into “lay knowledge and expertise”. Prior thought this that had been a mistake. Patients might have knowledge of their own lives and circumstances, and they might sometimes pick up enough knowledge to challenge medical professionals on one or two issues. However, he argued that “for the most part, lay people are not experts”, since they typically know nothing about which facts merit particular attention, important or how to distinguish one disease from another. “What is more they can often be plain wrong about the causes, course and management of common forms of disease and illness”. But if he was correct in his assessment of the changing sociological landscape, even though unwilling to accompany his colleagues down that particular path, then a question that follows is “why?” What had inspired this change in the way sociologists viewed the patient perspective?

Perhaps, it was changes taking place in society more generally that had led sociologists to look with greater attention, greater respect even, at how sick people described their lives and their conditions. One aspect of this was the declining status of professional expertise, which had been theorized by Habermas and by others. Another, related, aspect, was a growing sense that patients – or “health care consumers” – had rights that should be respected. From the 1970s onwards, there had been a growing acknowledgement in many countries of patients’ right to be consulted regarding their own treatment. In a report written 15 years ago for an interesting (though now defunct) Dutch patient movement think-tank, Geerke Catshoek and I suggested that there were a number of reasons for this. It had something to do with changing perceptions of minority rights and of ethics, but it also reflected the rise of consumerism.

Consumer organisations have often supported patient groups in demanding greater responsiveness to their needs from health service providers. The “consumer of a service” seems a more “empowered” individual than a patient … The patient – anxious, naked and in pain – has become the consumer, critically assessing the availability and quality of care available from competing institutions. This has long been the case at the edges of health care: in the private nursing home sector, for example, or health resorts and clinics whose customers are happy to pay to have their bodies look good. But now it has wider application. (Blume and Catshoek 2001, 7)

The concept of the “health care consumer” has the benefit of being more inclusive. Someone visiting the doctor briefly for a ‘flu vaccination for example would not necessarily regard him or herself as a “patient”. But this term can also be questioned. After all, there are people who are sick but who, for financial reasons, or legal status, are excluded from health service “consumption”. Not everyone was happy with the transformation of the “patient” into the “health care consumer”.

It seems to legitimate the encroachment of market forces into a domain once hallowed by a morality of care, rights, and obligations: the domain of citizenship. Is access to health care to reflect the morality of the community or that of the market? (Blume and Catshoek 2001, 7–8)

Another question also follows from what Prior suggests was a change in sociologists’ perspective. What is the “lay knowledge and expertise” that patients are now said to possess? In our 2001 report, we added a definition of the patient perspective. It refers, we proposed, to

accounts of sickness and disability which take for granted the patient’s right to autonomy and citizenship: to full participation in society. It seeks to articulate the experience of living with a (chronic) illness or disability, of which encounters with the health care system form one part. (9)

What kinds of accounts could these be? Some of them are texts in which patients themselves have written of their own experiences of illness or disability. These autobiographical accounts – which some writers have referred to as “pathographies” (Hunsaker Hawkins 1993) though others have explicitly rejected the term – often display the evolution of the disease or handicapping condition through the course of the individual life. They show how life goals may have had to be redefined in terms of changes in the possible and the to-be-expected, and in terms of the limitations imposed by social arrangements (e.g. Murphy 1990). The importance of these accounts, or at least the importance of the best of them, cannot be overestimated. This literature obviously has a privileged place in any exposition of the patient perspective. But why do people write them? Or perhaps the question is better formulated as “why did people write them long before public exposure of personal experiences in TV shows like Dr Phil or on social media became unremarkable?”

Arthur Frank, ex-cancer patient and sociologist, has argued that an important motivation for writing personal accounts of illness experiences is to show others how it is possible to live a rewarding and worthwhile life with – and not just “despite” – a chronic or even terminal illness (Frank 1995). The accounts of fellow sufferers can be an important source of inspiration and advice for people who are sick, or who are coping with the sickness or the disability of a relative. Indeed, an important function of the self-help groups that were growing in number in the 1980s was to provide the opportunity for the telling, and the witnessing, of accounts of personal experience. But as far as these groups and associations were concerned, members’ stories also had a different kind of value for the group or association as such. More was – and is – involved than the provision of a forum in which stories could be told.

The UK-based non-profit organization called DIPEx (database of individual patient experience) took shape at the beginning of the present millennium (Herxheimer et al. 2000).¹ The website that it now publishes (Healthtalkonline)² feature clips of people talking about their experiences of living with a range of health conditions and has proved a valuable resource for patients, their carers, family and friends, doctors, nurses and other health professionals. When DIPEx began, its originators surveyed associations representing a wide variety of conditions in the UK regarding their use of patients’ stories (Yaphe et al. 2000). Sixty-five per cent of the 309 associations which responded said that they use patients’ stories in some or other ways. They did so for a whole range of reasons, ranging from attracting media attention to encouraging others to help change professional behaviour or structures. Personal experiences are clearly an important political resource.

But what exactly is the patient perspective? How does it relate to the personal experiences of individuals? Is it some kind of a “distillation” from individual experiences (which will obviously not all be the same)? In what ways a distillation? If so, how and where does the distilling take place? The question becomes all the more intriguing in the light of the claim that the patient perspective can be seen not of a set of idiosyncratic beliefs but of “knowledge”: the knowledge that is now widely referred to as “experiential knowledge”. The question then is: what sort of knowledge is this? Is it like knowing how to swim, for example, or to blow glass? (O’Connor 2007) Is it akin to the kind of deep conviction that Michael Polanyi called “personal knowledge”: for example, knowing what constitutes moral behaviour in a given situation? (Polanyi 1962) Is it more like scientific knowledge that has passed tests of veracity or replicability, and can be codified and transmitted? Or different from all of these?

Social scientists’ analyses of experiential knowledge

The term “experiential knowledge” seems to have been introduced by Borkman in a 1976 article in the Social Service Review. It did not achieve any immediate currency, and when writing our report in 2001, we did not know of it or use it. Now, however, the concept is finding increasing use in a wide range of disciplines.³

“Experiential knowledge”, Borkman wrote, “is truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others”. There is a certainty that what is experienced is “true”: “that the insights learned from direct participation in a situation are truth, because the individual has faith in the validity and authority of the knowledge obtained by being a part of a phenomenon”.

This kind of knowledge, distinct from professional knowledge, was “a primary source of truth” for self-help groups. Indeed, for Borkman, it is through their reliance on this distinctive kind of knowledge that self-help groups can be distinguished from patient groups controlled by professionals. It is true, of course, that medical professionals also make use of knowledge acquired as a result of their clinical experience. Nevertheless, Borkman argues that the kind of knowledge she is referring to can be distinguished from professional knowledge because it is different in kind. Most importantly, it is holistic and total, rather than being divided into specialized segments as medical knowledge is. And, no less important, it is “oriented to here-and-now action rather than to the long-term development and systematic accumulation of knowledge”. In other words, it “is pragmatic, in that it emphasizes obtaining concrete observable results that ‘work’, as subjectively perceived by the individual who is going through an experience”.

Borkman tells us that her sense that such a term was needed, that a distinction had to be drawn from the “truths” underpinning professional practice, followed from her observation of the growing number of self-help groups in the health field. Consonant with this perception, current growth in use of the term may reflect the growing social and political significance of groups which are increasingly evolving from “self-help” to a more outward-directed and political “advocacy”.

Boardman (2014) has recently pointed out that, since Borkman introduced the term, its meaning has become less clear-cut. Whereas Borkman saw it principally as a resource, as a guide to action, the emphasis in more recent work is on “its contextual, subjective, unconscious and emotional properties”. Boardman reminds readers of a 1998 publication in which Abel and Browner, analysing the sources of women’s resistance to, or deviation from, medical advice, relate this to women’s “experiential knowledge” (1998). Looking specifically at studies of women’s experience of pregnancy, on the one hand, and caring for frail elderly relatives, on the other, Abel and Browner had argued that the experiential knowledge involved in these two instances was different. In the case of pregnancy, the women made use of their experience of previous pregnancies, or their sense of the changes taking place in their bodies. This they referred to as “embodied knowledge”. The experiential knowledge involved in their second case they called “empathetic knowledge”. It comes from a long and intimate association with the person being cared for. The stock of experiential knowledge on which women can draw, Abel and Browner suggested, is based not only on personal experience but also on the comparable experiences of others with whom the focal person identifies.

In interpreting her own empirical data on reproductive decision-making, Boardman builds on Abel and Browner’s distinction. She suggests that family members with different degrees of proximity to an inheritable condition have distinctive perceptions, distinctive claims to having experiential knowledge of it. The result is that potentially conflicting claims may emerge and have to be negotiated. “The familial context of this analysis brings into sharp focus many of the key issues around the uses of experiential knowledge, including what counts as experiential knowledge (both embodied and empathetic), who is entitled to lay claim to it”. Because experiential knowledge has become a form of cultural capital, to be used in legitimating one’s views or demands, its possession has value. In drawing attention to the contested nature of the concept, to the possibility of competing claims to possess experiential knowledge emerging, Boardman makes an important point. The fact is that such competing claims emerge regularly and systematically. The perspective of parents of children with a given impairment often conflicts with the perspective of adults with the same condition.

In many countries, adult deaf people commonly espouse (and enact) a cultural–linguistic view of deafness. They wish not to be seen as hearing-impaired individuals but accepted as members of a minority culture. On the other hand, parents of newly diagnosed deaf children rarely turn to members of the Deaf community for guidance regarding how best to bring up a deaf child. Instead, they turn to the medical professionals who claim either to “cure” the child’s deafness, or at least to enable it to pass for a hearing child. Similarly, I doubt that many parents of children diagnosed as autistic are likely to seek guidance from adult Autists associated with the “neurodiversity movement” (Chamak 2007). What sense does it make to say that one group has experiential knowledge whilst the other does not? Or that one has more than the other? Why do parents of children who are diagnosed as deaf or autistic rarely turn for guidance to adults with the same condition? What we can say is that the knowledge of living as a Deaf person, or as an autistic person – their experiential knowledge – lacks the authority accorded to (bio)medical knowledge.

Mazanderani, Locock, and Powell (2012) have discussed “the mechanisms whereby patients turn other patients’ experiences into a source of knowledge and support”. They argue that for this to happen, whether what is exchanged is emotional support or the sharing of practical advice, “the person receiving the information must identify with the person providing it. In the health context, this sense of identification is typically premised on the existence of a common diagnosis”.

So according to this analysis, it is in the process of “becoming a resource for others” that the epistemological status of an individual’s experience is transformed. They see their analysis as in some way an extension of the distinction between embodied and empathetic experiential knowledge: that

the epistemic validity of other people’s experiences as a source of knowledge in the context of peer support is premised, crucially, on managing the simultaneously embodied and empathetic dimensions of experiential knowledge. Indeed, others’ experiences would not be considered knowledge if they were not deemed, in some way, as an empathetic (shared) embodiment of a particular condition. (Mazanderani, Locock, and Powell 2012, 551)

People will see the experience of another as relevant for them insofar as they can – and are willing to – identify with that other individual. There are factors which might constrain this “identity work”. Specifically, Mazanderani et al. suggest that it might be limited by reluctance to identify with someone whose disease (they are discussing Parkinson and motor neurone diseases such as ALS) has progressed much further. Identifying with that other becomes too painful (especially when there is a photograph), making for what they term an “identity tension” “that needs to be negotiated in order for patients to be able to engage and benefit from experiential information sharing”. They suggest that the nature of the condition will, therefore, influence the extent and the ways in which experience is shared. Reading what another person with motor neurone disease had posted regarding their diagnosis, and most particularly when they had posted a photograph of themselves, interviewees focused on what they shared (the diagnosis) but at the same time (if shocked by what they saw or read) on the ways in which they differed from the person whose story they were reading or viewing. People were thus led to see themselves as “both different and the same – differently the same” in order to facilitate the (partial) identification that would enable them to benefit from the other’s experience.

Pols (2014) who prefers to talk about “patient knowledge” rather than “experiential knowledge” proceeds pragmatically, and in line with Borkman’s original use of the term. Her analysis is based on an empirical inquiry into the kind of knowledge patients’ use (and produce) in living with a limiting condition on a daily basis: a “knowing in action”. She does not follow the line opened up by Abel and Browner and Boardman and distinguish “embodied” from “empathetic” knowledge. Moreover, unlike the other authors I have discussed here, Pols acknowledges that what patients know, the knowledge they put to use in coping, draws on medical knowledge (what they have learnt from their professional advisors) as well as on their own raw experience. She sees “patient knowledge” as articulated solely in its use, as the source of “techniques for living with disease”, rather than a body of knowledge. Patients’ knowledge is practical knowledge, and cannot be contrasted with medical knowledge because though different, it draws on the latter, and their interrelations have to be part of a comprehensive analysis.

I suggest we analyze patient knowledge as the patient’s equivalent to clinical knowledge with, however, the objective of crafting an acceptable daily life, rather than coaching or treating different individual patients. Patients use and develop this practical knowledge to translate knowledge from different sources and advices they get into usable techniques, and coordinate this with the different aims they have in life. (Pols 2014, 78)

Like the authors I discussed previously, Pols understands patient or experiential knowledge in terms of its utility or use-value for other patients (or perhaps also carers). It is by virtue of its use by others that any claim to be regarded as “knowledge” must be judged.

But this does not quite exhaust the matter since we have already encountered two complications. The first, to which I will return presently, concerns the fact that some people’s knowledge, however, rooted in a lifetime of experience, may be ignored by others. I gave the example of Deaf adults commonly ignored by the parents of newly diagnosed hearing-impaired children. The second complication is that experiential knowledge has acquired applications other than in the context of personal coping. It comes into play when representatives of patient organizations are invited to help determine, for example, the quality of care available to people suffering from rheumatoid arthritis, or future priorities in cancer research. Caron-Flinterman, Broerse and Bunders looked at this specifically. Experiential knowledge, for them, arises when the lived experiences of individual patients “are converted, consciously or unconsciously, into a personal insight that enables a patient to cope with individual illness and disability”. (Caron-Flinterman, Broerse, and Bunders 2005, 2576). They go on to introduce the idea of “utility in context”. If patients’ experiential knowledge proves useful in a given context (e.g. “development of individual coping strategies, the mutual understanding and mental support of fellow sufferers, and individual health care decision making”), then it can be considered valid within that context. The evaluative criterion is thus “validity” and this corresponds to utility, though within a given context.

These authors also refer to the possibility of this knowledge being shared. “When patients share experiential knowledge, the communal body of knowledge exceeds the boundaries of individual experiences … ” But what is this sharing? If patient A’s experience only becomes a resource for patient B insofar as B can identify with A, in what sense is sharing possible? Is it like adding books to a library, so that a visitor may choose one that he or she feels they might find profitable? Or is more involved … for example, might it relate to the experiences of individuals rather as a generalization or hypothesis in science relates to the results of individual trials or experiments? Is it like the kind of idealization that goes into drawing a diagonal line through the middle of a cloud of points that are scattered about it, thus ignoring outliers? Madeleine Akrich studied the ways in which experiences related to childbirth were collected and aggregated in internet-based “epistemic communities”. Her interpretation is that, indeed, a process of abstraction is involved, independent of the personal identification of A with B.

The experiential knowledge in question is not a subject’s intimate knowledge relating to him/herself, it integrates and questions the relationship between personal experience and its interactions with the medical world. In other words, medicine is already involved with what is considered as “experience”. (Akrich 2010)

Howsoever we look at it, is some kind of test involved? Does someone ask (metaphorically speaking) “Is this book good enough to be added to the library?” “Is it interesting/representative/appealing/inspiring enough?” Or in the other instance “Have these readings been obtained with sufficient care?” Is the test to be of replicability? Of authenticity? Or, regularly referred to in this literature, of utility?

Assuming now that experiential knowledge can be deployed in various contexts, Caron-Flinterman et al. pose the question of whether it might be useful in the context of biomedical research (in essence, laboratory research, to be distinguished from health research). What seems to be necessary for a patient, invited to join a research committee, to make a significant contribution? Essential, they suggest, is that the patient has picked up enough of the professional language to be able to participate in the discussions. But this “proto-professionalization” carries the risk that it

may lead to non-representation of the patient community and to the loss of “pure” experiential knowledge. In the process of professionalization, patients internalise biomedical or other forms of professional knowledge, which they integrate into their own knowledge. Several interviewees stressed that in order to reduce the risk of losing specific patient perspectives, participating proto-professionalized patient representatives should stay in close contact with the patient population they represent. (Caron-Flinterman, Broerse, and Bunders 2005, 2582)

In almost all this literature, it is taken for granted that, given a common diagnosis, everyone’s experience is more or less equivalent in terms of its validity or utility. Though rarely made explicit, there seems to be an assumption that in patient collectives, where the experiences of people from different backgrounds are presented, shared, perhaps pooled, the common elements will emerge. The diagnosis is the principal determinant of identity. Missing from the analyses is any mention of the other statuses – age, gender, ethnicity, socio-economic status – which in any society might interfere with this identity work. Yet, the fact is that experiences of living with, or caring for someone with, any chronic illness or impairment are vastly influenced by these other statuses. Analysing accounts produced by parents of children with disabilities in the United States, Cindee Calton concludes that they all reflect the experiences of educated middle-class parents (Calton 2010). A poor working-class family will glean nothing from these accounts that might help it prepare for, cope with, the quite different challenges that it would face.

The authors who write the memoirs in question are able to do so because of the occupations they have (mostly writers and professors) and wealth and connections that they have because of these occupations … Thus when the public reads these books, perhaps to gain insight into how to raise their own child with a disability, they only read about how to do so with the financial and social resources available to the middle and upper middle classes. (Calton 2010, 853)

Interviewing parents of children with a hearing impairment in Ecuador, Lourdes Huiracocha and I reached a comparable conclusion (Huiracocha et al. 2015). Like all South American countries, Ecuador is marked by huge inequalities in wealth, social resources and access to health care. There were vast differences in the coping strategies available to educated middle-class parents and poor parents lacking both financial and informational resources. Nor were these differences ironed out in the self-help group that some parents had recently established. Not only was the group limited at the time to parents of children being raised orally (i.e. without access to sign language), but the lives of many parents (often single mothers) did not allow them time or opportunity of participating. The gap in the experiences of these families was far too great to be encompassed by any coherent distillation or useful guidelines. It is not only that some experiences are accorded greater status, means of dissemination, representativeness – but families differ in their ability to draw on the experience of others. They may have no access to it, or they may lack the control over their lives that would allow them to develop experientially informed strategies.

Mazanderani et al. were right to conclude that much remains unclear, and to “suggest that additional theoretical and comparative work that conceptualizes how ‘experience’ is turned into different forms of knowledge in healthcare is needed”. But I am pretty sure that the experiences that come to be seen as “valid” as “useful” – even as authoritative – will be vastly weighted towards the experiences of articulate middle-class patients and families. The experiences of families and patients like these are likely to be far more deeply infused by medical–professional language and insights than are those of the poor, the ill-educated or the marginalized. And although everyone has experiences, not everyone is equally able to articulate or utilize those experiences. In her article 40 years ago, Borkman seems to have been more aware of this than many later writers. So, she introduced as a second concept, the notion of “experiential expertise”, to designate

competence or skill in handling or resolving a problem through the use of one’s own experience. While everyone with the same problem may have experiential knowledge, the degree to which an individual has integrated the information and become competent in applying it to a problem varies. (447)

Tensions

Personal experience has no “inherent” authority, and is not “by definition” a source of expertise. Not only has its status changed over time, but also the extent to which it is taken as relevant differs from one society to another and within any society from one decision-making context to another. Where it exists, “relevance” has typically been won through years of advocacy and negotiation. In some parts of the world, experience of living for years with a chronic ailment is now accepted as leading to a certain sort of knowledge. Patients acquire knowledge-based-on-experience (experiential knowledge) of the way their own bodies respond to treatments. In today’s health discourse, they are acknowledged as “expert” in their own illness. Doctors who have treated such patients over long periods of time are said to respect their insights and their judgements and to work with them in determining, for example, the optimum dose of a medication. This is the kind of expert, empowered patient (or perhaps better here, “health care consumer”) policy in many countries now encourages people to become. A patient like this not only understands his or her own illness but also takes responsibility for its management, in partnership with the physician of course. The unstated assumption is that the patient’s understanding has been sufficiently infused with medical thinking that the way he or she deals with the condition is pretty close to what the doctor would advise. It often is like that. For example, in a study of an obesity internet discussion group, it was found that most participants were looking to develop precisely this kind of expertise. “‘Official’ advice from doctors and others was refracted through the lens of experience, but there remained an underlying commitment to medical models of illness and treatment” (Fox, Ward, and O’Rourke 2005).

I want now to argue that, in general, experience is treated as authoritative, as worthy of being characterized as “knowledge” only to the extent that it appears compatible with medical knowledge and assumptions. A patient who sets off on a radically different road, relying, for example, on some form of alternative medicine, or convinced that her anorexia helps her to cope with life, is likely to encounter anything but respect for the reasoning behind her decision. Healthcare professionals seem frequently to be seen as an obstacle to informed choice, rather than a non-directive source of advice and information. Consider vaccination, now the cornerstone of public health policy in most of the world. In many European countries, paediatric vaccination is voluntary, in theory at least. But that is not how health professionals tend to treat it in practice. The information literature parents are given, in the view of many of them, is not designed to inform and facilitate personal choice, but to induce conformity. It is full of glossy pictures, propaganda, nothing whatever on possible risks or side effects, on the duration of protection, on systemic effects on the child’s immune system. It is of no help in trying to make a personal decision since that is not its purpose: something particularly resented by highly educated parents accustomed to making reasoned decisions in most aspects of their lives. The social pressure exerted on parents who ask awkward questions, trying to reason things out for themselves, is deeply resented:

Well I went to the health clinic to have him weighed. The health visitor sort of came the line “you ought to have him weighed”. Anyway I went and they said he was due for his immunisation, “if you’d like to go along the corridor you can have him immunised today”, and I said ‘“I don’t want him immunised’ and there was like this shock horror, I mean they were really shocked. But I was very annoyed. They just tell you to go along the corridor. It is not a choice is it? Even though it is not compulsory, it doesn’t feel like that”. (Krijnen 2004, 637)

This is all the more so when what is at stake is not self-management, but how in general a particular condition, or patient population, should be handled. As we move from the private to the public sphere, as organized patient groups publicly question the ways in which a particular condition is treated, the status of experiential knowledge is contested. Parents who are convinced their child has suffered damage as the result of a vaccination, and who try to mobilize others with similar convictions via internet, will encounter more than mere scepticism.

Two challenges for social scientists

Modern consumer culture seems to display a growing obsession with health, with bodily perfection, with the maintenance of youthful vigour despite advancing years. A result is that an insatiable demand for medical “goods” – once thought to be a characteristic of the American middle class (Rothman 1997) – has become a global phenomenon. The future of health care will surely be a future which promises profit (to the pharmaceutical industry), status (to competing purveyors of care) and fulfilment (to wealthy consumers). These developments are more likely to exacerbate than to reduce inequalities in health or in access to health care, both within or between countries. Controversies around the future of health care will no longer be limited to patient groups demanding access to expensive treatments that health economists insist are not cost-effective. With advances in genetics, in proteomics and nanotechnology, in immunology, in reproductive medicine, there will be more and more issues of the kind that have traditionally concerned bioethicists. Given the breadth of its implications, there are good arguments for involving a broad spectrum of “stakeholders” in deliberating the future of health care. Those with the greatest interest in influencing the debate, in shaping its outcome, will be people with intimate (embodied or empathetic) experience of one or other illness or impairment. Insisting that their life or well-being is at stake, they may well demand that their preferences – distilled from their own distinctive (experiential) knowledge – be given particular credence.

Looking at a sample of studies in which social scientists have tried to establish what exactly experiential (or patient) knowledge is, we find little in the way of unanimity. Whilst some researchers have explored how it can best be deployed in decision-making, others have cast doubt on what it precisely entails. Lindsay Prior, for example, has emphasized its limits. Experience leads to the perception only of changes in a patient’s state or symptoms. It cannot uncover causes or underlying mechanisms. “So what lay people recognize and report upon is change, and not disease. Theirs is what might be called experiential knowledge. What is not experienced is not known” (Prior 2003, 48). Yet, on the other hand, there is no doubt that in trying to make difficult decisions about treatment, or care, or about how best to bring up a child with an impairment, people attach tremendous value to the experiences of others who have travelled a similar road and wrestled with comparable questions. We may not know how people’s experiences become valuable for other people, how experiences come to be treated as knowledge, or something knowledge-like … . but the fact is that they do. Despite current conceptual difficulties in attaching a precise meaning to the concept, it is clear that it plays an important role in informing personal choice and in legitimating broad participation in discussion of the future of health care.

As experiential knowledge becomes a more and more important form of cultural capital, the question of who can lay claim to it becomes increasingly salient. We have seen that the possibility of competing claims emerging (as, for example, between parents of children diagnosed as autistic and “neurodiversity” spokespeople) is always potentially present. There is no way of adjudicating between these competing claims in any “objective” manner. But because a great deal is at stake, there may be moves to strengthen claims deemed compatible with (and hence of value to) powerful interests. This has led some sociologists to investigate ways in which industrial corporations have set about influencing patient advocacy in a number of countries (e.g. O’Donovan 2007; Rothman et al. 2011). Though few suggest that the advocacy agenda has been wholly captured, a lack of transparency regarding the extent of sponsorship in each of the countries seems no longer to be in doubt. Going further, there are examples of satisfied “consumers” (users of an implant, for example) being supported by a manufacturer in establishing a “patient association” to lobby for funding, or to argue against existing associations critical of the intervention in question.

Society places various constraints on the authority accorded to one or other set of health/treatment-related experiences. Whose experiences achieve the status of “experiential knowledge”? Compatibility with professional opinion is one source of constraint. Compatibility with the market orientation of a consumer society is another.

Studying marketing of an anti-cancer drug, tamoxifen, a few years ago, Linda Hogle found that breast cancer activists in the United States felt that advertising was misleading (Hogle 2002). They expressed concern that “physicians may just give the drug to women who request it, bowing to pressure from consumers, and expressed considerable concern about women’s ability to interpret information presented in the ads … ”. A controversy over an advertising campaign arose as cancer activists mobilized against it, placing their own full-page ad in the New York Times. This coalition (Breast Cancer Action) referred to the drug as a carcinogen, and warned women of the commercial interests behind the information that was being given. But many of the women Hogle interviewed objected to what the activist coalition was saying. They had confidence in their own ability to act as informed consumers. Whatever the accumulated expertise of the cancer activists, women interviewed found the drug ads informative and objected to the activists’ cries of caveat emptor.

Powerful interests thus influence the status of potentially rival articulations of experience: amplifying some, silencing others. So too do socio-economic status differences in a society. Groups and communities which lack status, which lack articulate spokespeople, will find that their experiences are unheard, barred from access to the status of knowledge.

The first challenge for the social sciences that I want to identify flows from this. Mazanderani et al. suggested that additional theoretical and comparative work had to be addressed to the question of how “experience” is turned into different forms of knowledge in healthcare. I would now modify this to “how different forms of experience” acquire (or do not acquire) the status of knowledge, and the filtering mechanisms that come into play. How do these filtering mechanisms work, and whose experiences are in effect discarded? The sociologist too needs to be warned, however, that in examining competing claims, some probably backed by powerful interests (and able to mobilize substantial research funds), he or she might well be treated as partisan, arguments to the contrary notwithstanding (Martin 2016).

The second challenge relates to the implications of trying empirically to uncover and articulate the experiential knowledge of sick or suffering people. What responsibilities do such efforts bring with them? What is going on when we ask people who are, or have been, sick or disabled to tell us about their experiences? Think back to the example with which I opened this paper. How should we distinguish between her physician listening to Mrs Flowers’ story, and the ethnographer listening there too? The physician’s obligation is to offer a treatment, a respite, a relief of pain or suffering – though this particular physician clearly fails. The purposes of social scientists, in gathering and (re)writing illness-experiences, are likely to be different. Whether or not they take the patient perspective as their starting point, social scientists are often looking for patterns: in patient–doctor communication, or in generational experiences and expectations, or in how parents experience the diagnosis of a child. Sometimes, they – we – try to find these patterns through juxtaposition of stories. Sometimes, we try to find them by means of quantification and statistical tests.

If anthropologists, sociologists, biographers, journalists can justifiably claim to offer an articulation of the patient perspective, what is allowed and what is not? Does the ethnographer, collecting stories, have obligations analogous to those of the physician? Consider, I visit a patient and ask her to tell me her life story: to tell me what her experience of her illness has been, over the years. I prompt and question her, my tape recorder whirring … Later I edit her text, cutting out repetitions, giving it a little more structure, fitting it a little to the scholarly or other purpose for which I have recorded it. In this reworking of a patient’s story, directness and authenticity are lost compared to the original telling, but the authority of science is being added. On the other hand, when stories are collected and codified by sociologists, generalizations established, is what is produced still experiential knowledge … or has it become sociological knowledge? Have sociologists appropriated something properly belonging to their research subjects? What if the person whose story I am (re)telling rejects my interpretation of her experience – perhaps feeling angry and betrayed, as Estroff (1995) reports happened to her?

In my own previous work, I have been confronted with the distressing claim that we anthropologists and sociologists are engaged in turning other people’s experiences, other people’s suffering, into the stuff of which our own careers are built. In my teaching, I have found that students often take for granted their own right to interview, and to probe matters that might be a source of pain or of grief for those being interviewed. I have tried to convince my students that they have no such right: that there is an obligation on them to consider what – if anything – they should strive to offer in return.

Notes

1. https://en.wikipedia.org/wiki/DIPEx_Charity

2. http://www.healthtalk.org/

3. Web of Science^® reports 115 articles with “experiential knowledge” in their titles (as of 12 June 2016). Of these, almost 50% have been published since January 2010. If we search with the same term in “topic” rather than title, we find that slightly more than 50% of the 2300 papers have appeared in the same period. But what does this mean? If we search for “patient perspective” in the titles of articles, then, of the 6400 articles, more than half of these too have appeared since the start of 2010. It is possible that all we are seeing is the growth in volume of publications.