Article

Science, Technology, & Human Values

2014, Vol 39(1) 73-97
ª The Author(s) 2013
Knowing Patients: Reprints and permission:
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Turning Patient DOI: 10.1177/0162243913504306
sthv.sagepub.com

Knowledge into
Science

Jeannette Pols1,2

Abstract
Science and technology studies concerned with the study of lay influence on
the sciences usually analyze either the political or the normative episte-
mological consequences of lay interference. Here I frame the relation
between patients, knowledge, and the sciences by opening up the question:
How can we articulate the knowledge that patients develop and use in their
daily lives (patient knowledge) and make it transferable and useful to others,
or, ‘turn it into science’? Elsewhere, patient knowledge is analyzed either as
essentially different from or similar to medical knowledge. The category of
experiential knowledge is vague and is used to encompass many types of
experience, whereas the knowledge of the ‘expert patient’ may be assumed
to have the shape of up-to-date medical information. This paper shows
through a case study of people with severe lung disease that patient
knowledge can be understood as a form of practical knowledge that
patients use to translate medical and technical knowledge into something

1
Department of General practice, Section of Medical Ethics, AMC/UvA, Amsterdam,
Netherlands
2
Department of Sociology Anthropology, University of Amsterdam, Netherlands

Corresponding Author:
Jeannette Pols, Department of General practice, Section of Medical Ethics, AMC/UvA, Postbus
22700, 1100 DE Amsterdam, Netherlands.
Email: a.j.pols@amc.uva.nl
74 Science, Technology, & Human Values 39(1)

useful to their daily life with disease. Patients coordinate this with home-
grown know-how and advice from fellow patients, weighing different values
- of which ‘taking good care of one’s body’ is but one - that may conflict in a
specific situation. These practices result in sets of techniques that may be
made useful to others. The paper argues for two alternatives to state-of-
the-art medical research to turn patient knowledge into science: ethno-
graphies of knowledge practices (how patients know) and the collection and
making accessible of techniques (what patients know).

Keywords
public participation in science, lay expertise, patient knowledge, epistemol-
ogy, ethnography

Lay Engagement with the Sciences and Theories

of Knowledge
The invited and uninvited engagement of lay people in the sciences—
especially the medical sciences—is a hot topic in science studies these days.
Science, Technology, and Society (STS) scholars study the relations
between lay knowledge and the sciences roughly in two ways.1 The first
way builds on the sociology of scientific knowledge and is mostly
concerned with the politics of lay participation. For instance, Shapin
(e.g., 1994) claims that constituting knowledge is all about who succeeds
in gaining trust from others. Epstein’s (1995, 1996) classic study into the
participation of people suffering from AIDS also shows how these activists
gained credibility as partners in the early AIDS studies. Callon and
Rabeharisoa’s (2002, 2003, 2008) extensive research into concerned
groups, particularly the French organization of people with muscular dys-
trophy and their families is crucial here (Callon 1999, 2005). Concerned
groups, Callon and Rabéharisoa write, actively engage with biomedical
research to change their situation and social identities, providing research-
ers with knowledge as ‘‘researchers in the wild.’’ The importance of the
involvement of concerned groups, Callon and others claim, is that it leads
the way to new forms of citizenship, and give birth to a new kind of demo-
cratization—that of technoscience (Callon, Lascoumes, and Barthe 2010).
What lay knowledge consists of, however, is not always clear.
The second way of studying the relation between lay people and the
sciences is concerned with the truth claim of both scientific and lay knowl-
edge. Collins and Evans (2002) eloquently put on the agenda if and in what
Pols 75

sense the interfering public may be called experts, and how to distinguish
legitimate expertise from mere ‘‘political noise.’’ These questions aim to
establish when lay participation is relevant and epistemologically legitimate
(Jasanoff 2003, 2004). How democratic can technoscience be, and does
democracy in technoscience need notions of expertise? What does the
involvement of nonscientists mean for claims of the validity of scientific
knowledge? Collins and Evans tend to formulate normative statements
about the ‘‘grounds of knowledge’’ to separate valid expertise from political
motivations, thus making epistemology rather than social credibility the
judge of true expertise. Normative epistemological questions on criteria
for establishing what counts as valid knowledge have reentered science
studies.
In this article, I frame the relation among lay people, knowledge, poli-
tics, and the sciences differently. Instead of analyzing how lay people may
support the development of medical research, I ask how to articulate the
particular knowledge that patients use and develop in their daily practices
in order to live with their disease, and how this knowledge relates to forms
of medical knowledge. I will ask how to ‘‘turn this knowledge into science’’
and what forms of science would be fit for this job. My claim is that chroni-
cally ill patients and people with disabilities develop knowledge and tech-
niques to interpret, appreciate, and shape their daily lives with disease in a
good way. ‘‘Good’’ here is a matter of tinkering and weighing, of coordinat-
ing and translating knowledge, technologies, and advice from various
sources, including medical practices and technologies. From an epistemolo-
gical point of view, it is a ‘‘messy’’ knowledge, involving many different
techniques, values, and materials.
Nevertheless, I aim to show that it can be identified as a particular epis-
tème or form of knowledge: patient knowledge. I will articulate what this
knowledge consists of with ethnographic methods.2 It is a practical knowing
in action that I will analyze as daily practices of knowing rather than as a
body of knowledge. From these practices of knowing, different techniques
for living with disease may be derived. These techniques may be invented
locally but may not travel beyond the places of their birth, and hence cannot
be used as a source for care. This is a waste of resources for improving peo-
ples’ quality of life. The article explores ways to make these techniques
transportable, not using the research methods commonly used by medical
specialists, but by suggesting links to and specifications of clinical knowl-
edge traditions and disseminations used by clinicians (doctors, but also
nurses, physiotherapists, and other ‘‘paramedics’’) as well as those of Inter-
net patient communities.
76 Science, Technology, & Human Values 39(1)

In a reflexive twist, I aim to strengthen the tradition of studying knowl-

edge practices by articulating the object of research (rather than improving
research methods or by normatively establishing their grounds), as well as
the sociomaterial conditions - methods, devices, and practices - for bringing
this object into being (rather than analyzing ways to establish credibility).
To do this, I build on the epistemological work of Georges Canguilhem
[1966] 1989 and Foucault (1973; see below), laboratory studies engaging
with the object of knowledge (e.g., Knorr-Cetina 1999), and recent studies
into medical practices and care,3 particularly those venturing out of the
laboratories to study forms of knowledge and ‘‘reality making’’ in care
practices and daily life (Moser 2010, 2011). The question then is what kinds
of knowledge are shaped in these practices and what are the conditions for
doing so.
Although one case study is not enough to develop a more general con-
cept of patient knowledge, I will make a start with my exploration in the
specific practice of a group of Dutch people suffering from a severe lung
disease: chronic obstructive pulmonary disease (COPD or lung emphy-
sema). What forms of knowledge enables COPD patients to live with their
disease in ways they find acceptable? Can we make this knowledge trans-
ferable and useful to others, by ‘‘turning it into science’’ and if so, what
would this ‘‘science’’ look like?

Giving Voice, Making Voice

There is a lot of work done to study or assemble the knowledge of patients.
This work studies patient knowledge as different from medical knowledge,
for instance in the study of diseases not recognized by medical experts
(e.g., Repetitive Strain Injury in Arksey 1994 and endometriosis in Whelan
2007), or ‘‘orphan diseases’’ lacking medical research (e.g., muscular
dystrophy), or a disease for which patients find medical knowledge and inter-
ventions completely unhelpful (as some ‘‘mental health care survivors’’
claim, see e.g., Mowbray, Mosley, and Collins 1998). These scholars describe
patients as forming more or less coherent epistemic communities or commu-
nities of practice (Whelan 2007; Akrich 2010), presenting scientists with
complementary forms of knowledge (Callon and Rabeharisoa 2003).
A pitfall of studying patient knowledge in contrast to medical knowl-
edge is that it may reproduce a separation between the medical sciences (the
study of ‘‘nature,’’ ‘‘disease,’’ and knowledge) from the humanities and
social sciences (the study of ‘‘culture,’’ ‘‘illness,’’ beliefs, and meaning).4
In such an opposition, patient experiences drift out of the realms of what one
Pols 77

may call knowledge. This invites correction by medical facts and concerns
about patients’ noncompliance with therapy rather than an idea of knowledge.5
A ‘‘privileged perspective’’ may also romanticize patient experiences, while at
the same time making these irrelevant as knowledge. Crafting objects of
knowledge by ‘‘giving voice’’ to people otherwise unheard6 seems to suggest
that there is an authentic voice to hear once we remove the obstacles to hearing
it. Such a voice may be impossible to argue with. It relates feelings and events
accessible to sufferers only, making nonsufferers listen respectfully. The suf-
ferers present true experiences, not contestable knowledge. In the literature on
the experience of illness, the category of experiential knowledge is very broad
and encompasses many different types of experiences. There are also many
places on the Internet where patients share knowledge in many different ways,
varying from the ‘‘collection of stories,’’ to artistic expressions and the
assembling medical data on sites such as ‘‘www.patientslikeme.com.’’ How
to distinguish between knowledge and other forms of experience is unclear.
So an idea of the knowledge of patients as based in experiences that con-
trast with medical knowledge makes it unclear why experiential knowledge
should be called knowledge—it could be beliefs, or errors. The ‘‘exotic’’
position of patient experience neglects the notion that ‘‘giving voice’’ is
always also a practice of ‘‘making a voice,’’ where a particular story is
coshaped by the conditions in which it is told.7 Telling stories and making
them heard is always a practical accomplishment. Ethnography frames
patients differently than biomedicine does.
COPD patients present another problem with separating medical knowl-
edge from patient knowledge. Their practice shows a profound mixture of
homegrown concerns and values, with elements of medical knowledge and
technology. COPD is a widespread, broadly researched, incurable disease
that professionals care for routinely—if not always adequately. That COPD
is a medically recognized disease implies that the ‘‘experience-based exper-
tise’’ of people with COPD, to use Collins and Evans’s term, is essentially
blurred with the ‘‘certified expertise’’ of scientists and clinicians (see also
Akrich 2010 for this point). People with COPD are ‘‘medically socialized,’’
meaning that medical practices and knowledge form an integral part of their
experience. It does not make sense to assume that their expertise stems from
nonmedically mediated, ‘‘authentic’’ experiences alone.

From the Lab, to the Clinic . . . and Then Home

If patient knowledge is coshaped in medical practices and influenced by
medical knowledge and technologies, can we not assume that medical
78 Science, Technology, & Human Values 39(1)

knowledge is the same as patient knowledge? That it is only a matter of

accumulating medical knowledge ‘‘as usual’’ and implementing it in home-
spun practices and patient lives? This is certainly the assumption made in
‘‘expert patients’’ policies (Edgar 2005; Greenhalgh 2009) that aim to
improve the patient’s self-management. The assumption is that medical
knowledge and technologies enter patient practices unchanged; they just
need to be made available. STS studies have demonstrated time and again
that this is not how it works, and indeed, the analysis of COPD patient prac-
tices offers glimpses of the differences between patient knowledge and the
knowledge obtained from their doctors, inviting a thorough and systematic
rethinking of the relation between the two (but see Strauss et al. 1997; Will-
ems 1992; Schermer 2009 for inspiring examples).
Therefore, there are good reasons to see the knowledge of the COPD
patients as a particular kind of knowledge, with a particular object and con-
ditions for its development. It cannot be understood apart from the medical
practices patients engage in, nor does medical knowledge map onto it
straightforwardly. The distinction Georges Canguilhem made between the
laboratory and the clinic is useful here.8 Canguilhem analyzed the labora-
tory and the clinic as two epistèmes (forms of knowledge) each with its own
sets of practices, objects, methods, and aims.9 Contrary to laboratory prac-
tices, clinical knowledge does not aim to accumulate knowledge, but is a
form of practical knowledge that aims to improve the daily life of individual
patients (Mol 2006; Moser 2010). Where laboratory science aims to create
facts using procedures designed to ban subjectivity and error, clinical
knowledge derives its authority and reliability from the experience of the
clinician who calls on many observations of patients’ reactions to treatment
and advice in the ongoing process of observing, intervening, and evaluating
this particular case. Does the patient improve? If not, what could be the next
step? Clinical knowledge is about tinkering and adjusting.10
Clinical knowledge has been neglected in recent biomedical research11
and deserves far more attention. Here, I suggest we analyze patient knowl-
edge as the patient’s equivalent to clinical knowledge with, however, the
objective of crafting an acceptable daily life, rather than coaching or treat-
ing 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, in a context that is always changing.
Framing patient knowledge as a form of practical knowledge allows for
the study of the complex interrelations between patient knowledge and
medical forms of knowledge, and aims to narrow down the broad category
Pols 79

of experiential knowledge. Hence, this article adds a focused analysis of the

particular form of knowledge that is useful to patients’ daily lives, without
defining this knowledge as completely different from medical knowledge
and technology, nor as equal to it. Such a reading suggests different ways
to improve the sharing of this knowledge by turning patient knowledge into
science, not by enfolding it in current medical paradigms of doing research,
but by looking for ways that are more suitable and efficient to the specific
ways of making patient knowledge useful and transportable to others.

Living with COPD

The people with COPD in my study learned that their lungs would increas-
ingly lose elasticity and are prone to inflammation and that the disease has
no cure. In daily life, their most relevant problem is running out of breath on
exertion. The urgent questions that emerge repeatedly are how to deal with
breathlessness, and when to see their doctor. If they go too soon, they worry
that they will be bothering the doctor unnecessarily. If they wait too long,
they will have to survive scary crises, feeling that they are choking and
needing immediate hospitalization to treat the inflammation.
The people I worked with were in a rehabilitation clinic specialized for
COPD. They were staying there for three months (weekends off) or had just
left the clinic and were engaged in follow-up care. They were severely ill, and
their daily lives were much disturbed, with their doctors at the end of their
repertoires. During these three months of hard work, the patients became
attached to each other, fought, or kept their distance, and after they were dis-
missed some close friends stayed in touch using webcams provided by the
clinic. The webcams were the reason I was there; I was studying the workings
of the webcams to learn how these devices might influence care (Pols 2010).12
Although the patients were in a medical environment, they could not be
cured. Somehow, they had to learn to live with their disease. To help
patients achieve this, the rehabilitation clinic mobilized many different pro-
fessional specialists to assist them, such as nurses, physiotherapists, psy-
chologists, social workers, activity therapists, and volunteers who were
themselves patients. The discrepancies between the task of organizing a life
in which chronically ill patients learned how to live among other people,
with their ‘‘new bodies’’ and walking aids (Pols 2011), and the medical
practices they engaged in, in and outside the clinic, highlighted what was
helpful knowledge, whether that be medical or other knowledge.
The webcams placed in the COPD patients’ homes facilitated the
befriended patients’ organization of themselves into a ‘‘caring community.’’
80 Science, Technology, & Human Values 39(1)

Indeed, the webcams had a pivotal role in transferring knowledge from the
clinic to the home, and developing and sharing knowledge. My questions and
observations were concerned with what the patients had learned, what
difficulties they ran into when they returned home, and how they tackled
these using the webcam for mutual support or to consult their caregiver. In
the clinic, they had gained explicit knowledge about the state of the world,
or how to do things (propositional knowledge). They had trained their tacit
knowledge by developing know-how or skills needed for automatic routines
such as driving a mobility scooter (procedural knowledge; Polanyi 1966).
Particularly difficult was the level of practical knowledge I dubbed know-
now. This is an activity of knowing that the patients used to interpret new
situations, to establish what might be the problem, and how they could act.
Know-now is never automatic. It is about asking semiotic questions (‘‘what
is going on here?’’) and considering what to do about that. It is highly con-
textual knowledge that finds out how this particular situation should be
understood and dealt with. Know-now is needed when there is a breach of
skills or a failure of routines—and alas, this happens all the time.

The Know-now Activity

The first example shows the activity of knowing that patients have to under-
take again and again. It is to understand one of their main concerns: what
their breathlessness means in the particular situation they are in. It is to
know here and now.

Mrs. Smit: What I learned [in the clinic] is that you should be focused on get-
ting to know your limitations, and learn that you have to make these lim-
itations explicit. So when you are doing sports and you have to stop: how
can you tell the others? And when you notice you’ve reached the limit, how
do you deal with that? Lots of work in the clinic is aimed at recognizing
your limits, and learning what to do when you have.

The quote shows a proposition: one should respect one’s limits. Is Mrs.
Smit merely repeating what her caregivers taught her? Maybe she is. But liv-
ing daily life entails more than parroting instructions, as she noticed when she
tried to keep up with people who were walking too fast. Then it became clear
that the meaning of this proposition is highly dependent on the context in
which Mrs. Smit finds herself. Rather than clear facts, the statement provides
pointers to analyze the situation. What exactly a limit is, she needs to find out.
It may be her lungs posing their limits. This would be something Mrs. Smit
Pols 81

has to feel. Or it may be a group of people walking too fast to keep up with.
This is something to which she has to respond differently.
Mrs. Smit has undoubtedly developed skills and routines to deal with var-
ious situations. This aside, however, the knowledge Mrs. Smit needs may be
understood as know-now, a situated activity of knowing. ‘‘Limit’’ functions
as a sensitizing concept, not a definitive one. It serves to find out relevant things
in a variety of situations. The question ‘‘what is a limit here and now?’’ is both
specific and open at the same time. The question is a tool or a method to engage
with a situation. ‘‘Knowing-now’’ is taking action, a verb not a noun.
Yet, diagnosing the situation is not the only thing Mrs. Smit has to do. She
has to decide what to do about the situation. Again, this needs context-
sensitive consideration. Should you explain to people that you have COPD?
Merely lag behind when people walk too fast? Take medication, maybe?
Or—heaven forbid—see a doctor? This calls for improvisation rather than
putting a plan to use or applying a skill. Suchman (2007) uses the term situ-
ated actions to refer to these kinds of improvisations. There is no primary
cognitive strategy, which one then puts into practice, but repertoires of pos-
sibilities to react to a situation. Every set of actions needs to be sensed and
thought through in terms of expended energy, and fresh arrangements need
to be made for the best way to live the situation. It demands the persistent
solving of new puzzles and calculations with ever-changing sets of variables.

Communities Creating Know-now

To know-now points at the activity of getting to know something. Done by
individuals, it is also undertaken by patients together. They do this, for
instance, if they are trying to understand what is happening when they get
out of breath. Does it relate to cold weather, air pollution, inflammation of
the lungs, or something else? The patients with webcams formed an active
community that produced know-now.

Mr. Van Leeuwen: I think the contact with fellow patients is really nice.
Because there is always a night where you wake up, and you are short of
breath, and things do not work out, and . . . And then you think: is this me,
is this my illness, or what? But when you can talk to another patient, and he
or she feels just as bad, than you think: well, I’m not the only one suffering
today. And then it may turn out that there is a storm depression coming or
something like that. That has the same effect as going into the mountains. The
air pressure diminishes and if your breathing is bad, and there is less oxygen in
the air, you notice it right away, definitely. Then you see: it’s not just me.
82 Science, Technology, & Human Values 39(1)

Included in this knowledge is a proposition set by a law of physics: lower

air pressure equals less oxygen, demanding more frequent breathing. But
know-now does not aim at establishing this proposition, it helps to diagnose
a particular situation and find ways to react to it. Mr. Van Leeuwen and his
webcam conversation partner are trying to find out what their bodies are
doing at a specific time. They are not sure why they are out of breath. Being
out of breath when thunder is on its way is something you can sense physi-
cally. You can expect this bodily response if your lungs are susceptible. To
find out if this indeed was happening, they checked with each other if their
bodies were behaving like barometers, or if something else was the matter.
Their practical, embodied knowledge created know-now, to identify the
nature of today’s problem and think up an appropriate strategy to deal with it.
Interestingly, and in sharp contrast to medical knowledge, their bodies
are both the problem and the instrument to diagnose the nature of the prob-
lem. If they are both out of breath, this could point to a problem in the atmo-
sphere rather than a problem in their lungs. Van Leeuwen and his fellow
webcam users develop this knowledge together: they need the other bodies
to check what they are dealing with. Hence, their practice creates a network
of bodies that function as ‘‘measuring stations’’ and sources of knowledge.
This provides them all with knowledge that bodies with extremely sensitive
lungs may create together. The illness here connects them within a caring
community of people who share, but also need to create this knowledge
in particular situations. They use their bodies to develop know-now.

Situating Knowledge: Transfer and Translation

Technology plays different parts in the lives of practicing patients; it may
give access to particular kinds of knowledge, such as the webcam support-
ing the caring community. The patients also used the webcam to develop
knowledge together, and it helped shape the content of this knowledge
(by giving access to fellow patients rather than professionals), even if the
webcam is a ‘‘modest’’ technology when it comes to defining problems.13
The next example shows how COPD patients translate more particular
forms of knowledge embedded in technology to their everyday situations.

Mrs. Jarmus: You see, I had to learn to walk slowly, right from the start, walk
very slowly. This is not what I naturally do. Then I used the saturation device
and I noticed that after walking for one minute, my saturation level goes down,
or goes below 90, and then I have to stop. So, well . . . One minute is not far.
Interviewer: So walk one minute and take a one-minute break.
Pols 83

Mrs. Jarmus: Yes, that could be possible. But I find it so hard to practice!
You have to stop in front of every shop window, look very interested in
something, when there is nothing to see! Play with your car keys or what-
ever. And sometimes you can’t even do that. I have days when I can hardly
get from the kitchen to the sofa.

Mrs. Jarmus uses a saturation meter, a device that shows the level of oxygen
in the blood. When the level drops below 90 percent, this means there is too
little oxygen, and this may damage tissues. In the quote, Mrs. Jarmus makes
several translations. The first is from saturation to time where 90 percent
saturation becomes one minute of walking followed by one minute of needed
rest. The second goes from time to position. One minute of rest becomes one
minute of standing still in the street. Along the way, Mrs. Jarmus also translates
what her body is doing. There is the body with variable and critical levels of
oxygen in the blood. There is the body that needs rest to recover. And, finally,
this becomes a body that may be observed and judged by others. Mrs. Jarmus
needs all these translations to make the saturation meter useful in her daily life.
It hands her variables she actively adapts. Each different body has its own dif-
ficulties and sensibilities that cannot be reduced to one body. Indeed, the body
comes in different versions. The doctor may want to use the saturation meter
for diagnosis. The physiotherapist may want to use it for training purposes. The
patient needs to actively fit its lessons into daily life.
Patient knowledge is hence a form of practical knowledge that does not
sit inside textbooks or in heads. It is part of practices, devices, and situa-
tions. This is why the people with COPD found it difficult to transport what
they had learned in the clinic to their homes.

Mr. Pietersen: There are so many little things you run into. It is as if you have
had 12 weeks of theory and practice [in the rehab clinic], and when you get
back home, you are thrown back on yourself. The transfer is really intense.
It all seems so simple in the clinic. They show you how to do things. For
instance, you learn to find a balance between exertion and relaxation. You
should always exert and then relax, exert then relax, exert and relax. That bal-
ance. But when you are back home: there is a date with X, an appointment with
Y, and so on. You fall back into your old routines so quickly. You cannot
unlearn them in 12 short weeks. Yes, in theory maybe, but not in practice.

Mr. Pietersen shows that the problem of transporting knowledge is not

merely a cognitive one. He has a very good, easily remembered mantra:
exert then relax, exert then relax. His problem is not to remember it, but
to put it to use in his daily practices.
84 Science, Technology, & Human Values 39(1)

One of the reasons why Pietersen’s body seems to ‘‘forget’’ the theory is
that different situations trigger different memories, embodied in routines.
Pietersen slips back into the ‘‘old routines’’ that do not fit his new situation.
However, another angle is to see that knowledge is distributed over situa-
tions and the devices in them, which have their own ‘‘memories’’ and ways
to remind people.14 In the clinic, for instance, many people were learning
and practicing the same routines, providing the reinforcement of constant
examples. Caregivers never tired of pointing out what was important.
Hence, everyone was constantly reminded of what they should be con-
cerned about, what to do, and how to interpret their immediate situation.
To transfer this new knowledge, however, means remembering to put it
to use in various situations, often situations that had previously never been
about disease or remedies and thus provide no cues for the new behavior.
The situation at home triggers other ways of behaving than the situation
in the clinic. It may be organized around the wish to work efficiently
through many appointments, or around particular norms of cleanliness. Peo-
ple have to reorganize their situation to provide them with reminders, for
example, by installing material cues or by involving family members and
friends to help embed the new routines.

Medical or What?
As mentioned above, the idea of patient knowledge blurs the boundaries
with different forms of medical knowledge, without adding up to the same
knowledge. Medical knowledge is used in daily life practices, and hence
changes into something else. Oxygen saturation turns into judgmental
gazes, prescriptions that sound obvious in the doctor’s office bump into old
routines. Distinctions between medical and other matters are ultimately
irrelevant to patients. To them, medical practice is always a daily life prac-
tice (for this point, see also Mol 2002b). Hence, the question of what makes
an intervention good for an individual patient is not that it is based on gen-
eral evidence that it has helped many people, but that it is an intervention
that will help this patient.

Medical Interventions in Daily Life

The next example shows that medical interventions are interventions in
daily life, but are not always helpful. This COPD patient went to the hospi-
tal in her hometown:
Pols 85

Mrs. Thie: That doctor, he was a substitute for my own doctor, and he says
[imitates accent]: ‘Well missus, it don’t get any better than this.’ Well, that
gave me the heebie-jeebies! At Lungs [COPD department in the hospital]
they’re very pessimistic, they don’t give you much hope. You have to be
optimistic yourself. Because if you listen to that . . . Of course I know
I’m ill, that my lungs are very bad. But if you don’t get over it and think:
‘I’ll cope’ well, if you don’t do that, you’ll die of misery.

Another patient called the lung function test incompatible with life. The
fact that their lungs are not going to get better spooked them because, in the
shape of a diagnostic statement, it gave them no handholds for organizing
life in any sensible way. Mrs. Thie would rather ‘‘die of misery.’’15 What
did help her was a kind of knowledge that she could make useful with, or
despite, her diseased lungs. Mrs. Thie does not shy away from the truth
of the diagnosis of her lungs, but from the implied pragmatics. As an inter-
vention in daily life, the specialist’s measurement was counterproductive.
The patients could only translate it in unhelpful ways, so it improved noth-
ing. Compare the lung function measurements to this example about the dif-
ficulty of taking a shower when short of breath.

Mrs. Jacobs: When you take a shower, and you are ready, well, you take a
towel [mimes drying her body and her hair], but she [her webcam friend]
said: ‘You can wear a bathrobe and wait till you are dry and you will not
catch a cold’. That takes no energy. But drying yourself does! But you have
to learn this! Think about yourself. After you take a shower, you grab a
towel. But now I take 15 minutes. The rollator is near the door, I take the
phone in case someone calls. And I take it easy and recover with my bath-
robe on. I dry a little, and then, a little deo, a little cream on my face, and
then dress.

Contrary to the lung function measurements, this knowledge is directly

useful for Mrs. Jacobs’s daily life. This point is not about empathy, or that
towels are not medical solutions, but about pragmatics. People can imme-
diately use and try out the advice. It needs little translation and evokes no
fatalistic interpretation. As a form of knowledge, it is provisional (it may
work for Mrs. Jacobs, but not for someone else), but it is not harmful, just
ready to be tested and close to everyday practices.
This does not mean that evidence-based medicine could be done away
with. Nobody would want the doctor to give them a pill that has not been
thoroughly tested, or an operation that is merely an experiment by a creative
surgeon. However, COPD patients need practical advice that helps them
86 Science, Technology, & Human Values 39(1)

live their lives. Practical interventions like bathrobes may help, but it would
be absurd and unnecessary to organize a trial to test them. Other than med-
ical interventions in bodies these interventions may be safely tried out and
tinkered with. Such practical tips are, however, not always part of the reper-
toire of professionals, notwithstanding their usefulness to people with
COPD.

Coordinating Values and Knowledge

Even when medical knowledge is practical, people do not always put it to
good use. The patients have to coordinate different problems with different
values in life. Reasons for neglecting their bodies include, for instance, con-
cerns about children, financial worries, too many different tasks to fulfill, or
having other norms of cleanliness, and so on.

Session on ‘looking after yourself’ in the clinic: The patients had to list
domestic activities they would do when they expect visitors. The caregiver
asks if people made choices in the activities they would or would not do.
Everyone present answers that their home must be clean when visitors come.
Mr. Fransen says he would use the vacuum cleaner and tidy up the mess, even
if it meant knocking himself out by the time his visitors arrived.

Mrs. Pietersen says that when she goes out on a visit, she always checks
if the house is clean. That’s how it is, and how it should be. Mr. Fransen says
he would die of shame if his house were a mess. ‘I would do anything, even
if I had to crawl over the floor with the vacuum cleaner.’ Mrs. Pietersen
agrees.
The patients in this discussion value cleanliness over their fitness. To
them it is out of the question to show visitors a house that is not perfectly
clean. One may interpret this as a particular culture-bound, exotic, even
unwise belief. However, if cleanliness is so important to them, crawling
over the floor with a vacuum cleaner is rational behavior, although they may
consider alternatives such as hiring help. When cleanliness rather than
health is the organizing value, a different repertoire of activities is fore-
grounded, and this may lead to a conflict. These people deal with their dis-
ease as one thing among many other things that are important in their life. In
so doing, they make decisions that may or may not fit with a medical logic.
In daily life, what is medical and what is not, is blurred, and entangled with
conflicting worries.
Pols 87

When medical interventions are always interventions in daily life, help-

ful remedies or interventions do not have to have a medical tint or texture.
Practical remedies for dealing with COPD can be as unorthodox and varied
as the problems people face.

MR Gregorus: The hardest bit was to accept it. Really, back in 2003, I’d had
enough. I didn’t see the need to go on anymore. I’d had that many diseases,
really, and if there was one tiny little virus going round, I was bound to get
it. Really. Then one of my daughters gave me that picture [he points to a
photo of three young children]. This is a holy picture. It’s three of my four
grandchildren. She came with that pic and said if I didn’t know the mean-
ing of life any more, I’d just have to take a look at that. It would remind me.
I don’t know if it is what helped me through, but it’s still a very important
picture. [laughs]. That’s why it stands in pride of place on the table!

The picture ‘‘works’’ for Mr. Gregorus, enabling him to not give up on
life and succumb to despair. It proved to be a life-saving remedy in Mr. Gre-
gorus’ case. What the examples show is that patients face the task of coor-
dinating their different inputs and concerns in a meaningful way. Is my
condition caused by despair or inflammation? Will it need a pill or a pic-
ture? How to combine lungs the specialist has just written off with a per-
spective that allows one to keep on moving? The relevant logics are
different, medical and other, and come together in daily practices that are
fussy, incoherent, specific to individuals, and prone to change. Indeed, find-
ing ways to live well with COPD demands an impressive amount of know-
now and improvisation.

Patient Knowledge?
The practice of giving voice to patients is blooming in the medical sciences.
Such practices often occur within the traditional bounds of producing bio-
medical knowledge. In this way, however, the particular kind of knowledge
patients need to live with their disease remains largely unarticulated and
inaccessible to other patients. These practices of giving voice create a very
particular patient voice, while silencing another, more useful one for
patients with common diseases for whom cure is not feasible.
What is this ‘‘more useful’’ patient knowledge in the practices of people
with COPD? Thinking about patients’ knowledge in terms of ‘‘experience-
based knowledge’’ (see, e.g., Collins and Evans 2002), that is, in an attempt
to ground it, does not seem helpful to describe its specificity. Schicktanz,
Schweda, and Franzen (2008) not only suggest this knowledge comes from
88 Science, Technology, & Human Values 39(1)

people ‘‘affected’’ by a certain condition, such as patients and their families,

but also describe the problem that this category hinders the transferability of
patients’ knowledge. My suggestion is not to ground patient knowledge, but
to articulate it.
There are two possible objects of ‘‘patient knowledge’’ that may be
inferred from the analysis. The first is the episte`me of patient knowledge
that shows the activities of patients knowing in practices of living with dis-
ease. It is about how patients know. The second is the techniques and ‘‘user
manuals’’ for living with disease and (medical) technologies that can be
derived from these practices. This is about what patients know. Both objects
need different scientific practices to articulate them, to make (knowledge
about) patient knowledge transportable.

The Epistème of Patient Knowledge

The analyses showed that the COPD patients, particularly when they were
working together, were concerned with an active development of practical
knowledge for getting to know what was going on in a particular context
and find out how to act (know-now). Environments could be of help, or
make this more difficult. The small group of webcam users constituted a
kind of meteorological practice wherein bodies were both the concern and
the instrument for the ‘‘diagnostics’’ of the situation. To help them do this,
patients engaged in active translation and coordination work.
Patient knowledge had to do the work of translating medical parameters
into practical courses of action. The COPD patients made different transla-
tions to interpret measurements, related to different versions of understand-
ing and treating their bodies. Following this translation work, the patients
needed to organize the practical consequences. If one does not know how
to deal with judgmental gazes, knowing when to stop walking is still of little
help. Handing people technology, as policies of the expert patient proclaim,
makes little sense if people cannot find ways to fit it into their lives.
Coordination work for the COPD patients involved juggling various
knowledges: translated bits of medical knowledge with homegrown
know-how and tips from the neighbors with the weighing of different values
in each new situation. Patient knowledge here showed processes of tinker-
ing and improvisation. One may want to be a good parent and spouse, an
acceptable employee, a happy cyclist, and a prudent caregiver of one’s
body. Patients living with COPD needed to figure out how to set priorities
or reconcile goals in particular situations—or deal with failures if this did
not work.
Pols 89

Turning the Epistème of Patient Knowledge into Science

To learn about knowing ‘‘in action,’’ or about the epistème of practical
patient knowledge, ethnographies are particularly fit. Ethnographies may
learn how patients know by analyzing how patients look after themselves
and others, what problems they are trying to solve, and what kind of norma-
tive decisions they make. There are parallels between their engagement in
knowing-now and the material semiotic work the ethnographer has to do;
both try to make sense of a world that is not familiar to them, to find words
to frame what is going on, and to learn by consulting others and by trying
out how to act in different situations.
Comparative ethnographies in different settings, where people suffer from
other chronic diseases, use different devices and shape other forms of care,
may show different concerns and different kinds of patient knowledge ‘‘in
action’’ (see also Epstein 2008 for this point). Comparing these practices will
clarify if we can develop more general concepts of patient knowledge and
will learn more about practical knowledge of living with disease in relation
to different forms of knowledge. ‘‘Turning patient knowledge into science’’
here would mean turning practices of knowing into ethnographic knowledge.
Naming and framing patient knowledge cannot be done in research in which
variables need to be defined a priori, as in quantitative studies that are para-
digmatic in biomedical research. Ethnography is fit to conduct research out-
side the researcher’s laboratory, as well as outside the laboratories of their
colleagues, where STS scholars like to do their fieldwork. The next step is
to open up and compare yet different knowledge practices.16 Observation
is a good technique for articulating knowledge that is tacitly enacted through
routines and things. It is suitable for comparing complex situations character-
ized by many variables. The ‘‘medical anthropology of knowledge’’ that
hence emerges would make insights in the practicing of patient knowledge
available to others—researchers, patients, professionals, and policy makers.

Patient Knowledge as Techniques

The second object of patient knowledge consists of the techniques people
use and develop. Examples discussed were the bathrobe, ways of dealing
with despair, and techniques for moving about when out of breath. Tech-
niques could also concern medical technologies, when patients found prac-
tical translations that made them ready to use. The articulation of these
techniques does not seem to be the greatest challenge here, nor is there a
need for constructing ‘‘evidence’’ that these techniques work. Other than
90 Science, Technology, & Human Values 39(1)

medical interventions in bodies, these interventions may be safely tried out

and tinkered with. The main concern here is collecting these techniques and
making them available to others, patients and professionals.
The articulation, collection, and making available of techniques links
well with knowledge traditions of nurses, physiotherapists, and other ‘‘para-
medic’’ professions that are oriented to practices and are close to the daily
life of patients. This knowledge is available in the shape of guidelines, tips
and tricks, case histories, and so on, and are often organized and presented
through websites and in teaching.17 The collection and sharing of tech-
niques also links well to current web-based Internet communities of patients
presenting advice and commenting on each other’s stories. These websites
may, however, be hard to find for others, and often contain many different
types of information, ranging from personal stories and insights, to tips,
emotional revelations, and reviews of local care providers. Often, the tech-
niques are enfolded in individual accounts. It may well be a role for patient
organizations to collaborate with nursing scientists and social scientists in
order to organize these kinds of materials and make the techniques more
easily available to their members. The job here would be to create databases
that are accessible to patients as well as professionals.

Conclusion
Ironically, recent practices of giving voice to patients are oriented toward
agenda setting in fundamental biomedical research, with the danger of estab-
lishing debatable political victories rather than solid epistemological agen-
das.18 In biomedical research, the vision of cure as well as ways to define
the body as its object are often much more appealing than those of having
to live with chronic disease and finding ways to handle matters of daily life.19
Without a change of methods, the voice given to patients here cannot ask for
research into daily life matters, even if these are essential for patients to live
with their disease. But if care keeps more patients and their relatives busy
than biomedicine is able to cure, this calls for a drastic reorientation of health
care—and better scientific practices for making patient voices. These voices
could be made to utter helpful knowledge for people with chronic disease in
its own terms, rather than providing stories and meanings that do not fit into
biomedical ways of doing research or approaching disease.

Acknowledgments
The author wants to thank the patients who allowed her a view into their lives and
the employees of the clinic who were part of this research for their cooperation. She
Pols 91

thanks Amade M’charek and Dick Willems for their comments on earlier drafts of
this article.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research,
authorship, and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research,
authorship, and/or publication of this article: The research was financed by NWO
Ethiek, Onderzoek & Bestuur, which was continued in the European Communities
Seventh Framework Programme ‘‘EFORTT.’’: Ethical Frameworks for Telecare
Technologies for older people at home.

Notes
1. I will stick to health care practices and medical knowledge in this article, though
my analysis has gained from the cases of Cumbrian sheep, nature lovers, and
many other case studies (see e.g., Wynne 1989; Ellis and Waterton 2004).
2. Anthropological methods are not alien to medical science (Anderson 2008).
Today, many anthropologists claim culture as their object, leaving knowledge
about the body to biomedicine. Other anthropologists contest this division of
labor, and my case stands in warm support of this work.
3. The authors in Mol, Moser, and Pols (2010) are a good place to start. Some key
publications are Mol (2002a, 2008), Mol and Law (2004), López and Domènech
(2009), Struhkamp, Mol, and Swierstra (2009), and Winance (2006).
4. Nature–culture divides are food for empirical theorists: Mol (2012), Mol and Law
(2004), M’charek (2010, 2013), Pols (2010), and Pols and M’charek (2010).
5. Such is the hazard of analyzing ‘‘explanatory models’’ of illness, where the lay
models form the ‘‘beliefs that contrast with the knowledge and facts of biome-
dicine’’ (see Kleinman 1980 and Pols 2005 for a critique). It is also a reason why
the term knowledge by experience has been romanticized.
6. Examples of attempts ‘‘to give voice’’ to patients and the intricacies thereof
include inviting patients to engage in the setting of the medical research agenda
or in creating guidelines (Bovenkamp and Trappenburg 2009), or making
patients coresearchers in participatory designs (Callén et al. 2009).
7. Velpry (2008) shows how staff coconstructed a ‘‘proper’’ patient perspective,
discerning these from the ones they deemed unproductive to the well-being
of their clients. Pols (2005) analyzes how the specific situation of the one-on-
one interview created a ‘‘patient without a perspective’’ on the long-stay ward
in long-term mental health care.
92 Science, Technology, & Human Values 39(1)

8. Michel Foucault has extensively studied the episteme of the clinic, as a practice
in which a new object came into being by articulating and practicing it.
9. After Canguilhem, the biomedical laboratory episteme of today has been shown
to be multiple (Mol 2002a; Barbot and Dodier 2002).
10. Tinkering comes from the French term bricolage, coined by Lévi-Strauss
(1966), but see also Prior (2003), Barbot and Dodier (2002), Hester (2005), Mol,
Moser, and Pols (2010).
11. For the uneasy relation between evidence-based medicine and clinical experi-
ence, see Pols 2012, 99-131.
12. I conducted fieldwork and interviews over a period of six months in the reha-
bilitation clinic, talking to patients, carers, technicians, and management,
attending meetings and training courses in computer use, and I followed one
patient on her days in the clinic and visiting different professionals. I conducted
in-depth interviews with seven professionals and eleven patients.
13. See Pols (2012).
14. See Hutchins (1995) for ‘‘cognitions in the wild,’’ showing how knowledge is
part of a practice and is distributed over people and devices. Palen and Aaløkke
(2006) show how patients are not much concerned with what their medication is
for, but with materializing cues to not forget to take it.
15. Huyard (2009) shows that patients do not experience a diagnosis with cystic
fibrosis as helpful, because it does not provide them with options to act. Others
report that even terrible diagnoses may be helpful because it allows people to
make sense of their symptoms and affirms subjective feelings of being unwell.
See, for example, Pinder (1992) on Parkinson’s disease.
16. Moser (2011) argued in this journal that it is high time to study knowledge
practices and what she calls ‘‘practices of world-making’’ outside the
sciences.
17. This clinical knowledge of nurses does not always sit well with the latest ten-
dencies for evidence-based practice (EBP) in nursing. Levin and Feldman
(2006) define EBP as ‘‘a framework for clinical practice that integrates the best
available scientific evidence with the expertise of the clinician and with
patients’ preferences and values to make decisions about health care.’’ Here, the
knowledge (in the shape of evidence) comes from scientific research and the
clinicians expertise, whereas the patients bring in ‘‘preferences and values.’’
Foregrounding this particular scientific epistème also runs the risk of pushing
clinical expertise to the margins of scientific exploration, by replacing this prac-
tical knowledge with scientific evidence as a way to improve it. See Pols (2012,
135-51) for a discussion.
18. Bovenkamp and Trappenburg (2009) show that it is very hard to translate
patient contributions into ‘‘evidence’’ to be used in guideline development. That
Pols 93

this would imply the mixing of different epistèmes goes unnoticed in a practice
where knowledge is not problematized.
19. For this point, see also Moser’s (unpublished paper) plea for care for people
with Alzheimer rather than millions of research money spent on the hunt for the
‘‘Alzheimer pill.’’

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Author Biography
Jeannette Pols is Socrates professor at the Department of Sociology Anthropology,
University of Amsterdam, and Associate professor at the section of Medical Ethics,
Department of General Practice, Academic Medical Centre (AMC, University of
Amsterdam).