Social Science & Medicine 166 (2016) 25e32

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Social Science & Medicine

journal homepage: www.elsevier.com/locate/socscimed

‘Keep complaining til someone listens’: Exchanges of tacit healthcare

knowledge in online illness communities
Drew Foster
University of Michigan, Room 3115 LSA Building, 500 S. State Street, Ann Arbor, MI 48109-1382, USA

a r t i c l e i n f o a b s t r a c t

Article history: This article examines online exchanges of advice and knowledge among patients. It draws a distinction
Received 20 January 2016 between explicit healthcare knowledge (i.e., facts about symptoms and treatments) and tacit healthcare
Received in revised form knowledge (i.e., know-how about navigating the healthcare system). Based on analysis of message board
1 August 2016
interactions at a prominent online illness community, I find that patients routinely encourage one
Accepted 4 August 2016
another to exercise agency strategically in clinical encounters by honing specific interactional skills. I
Available online 5 August 2016
isolate three major techniques that are advocated within the community (affect regulation, information
management, and treatment persistence) and frame them as discrete examples of tacit healthcare
Keywords:
Tacit healthcare knowledge
knowledge. I argue that tacit healthcare knowledge constitutes a potentially potent source of empow-
Patient-consumers erment for patients that can help them to receive their desired form of care from the health system and
Internet to negotiate relationships with medical professionals and institutions. I conclude by discussing how the
Chronic illness concept of tacit healthcare knowledge further clarifies the wide variety of lay knowledge exchanged
Patient empowerment among patients online.
Virtual ethnography © 2016 Elsevier Ltd. All rights reserved.

Social phenomena that influence a patient's relative agency are and treatments) to the online exchange of tacit healthcare knowl-
an abiding concern in social studies of health and medicine. The edge (i.e., know-how about interacting effectively with the health
internet, which facilitates collaboration and commiseration be- enterprise and its representatives).
tween ill people in unprecedented ways, has been examined as a
major source of potential empowerment for patients (Conrad and
1. Background & conceptual framework
Stults, 2010; Seçkin, 2010; Ziebland and Wyke, 2012). Online
communities and support groups for ill people have been enabling
The internet has been characterized as a “virtual medical li-
patients to exchange knowledge and support since the mid-1990s
brary” (Seçkin, 2010), but scholarship on the matter might suggest a
(Feenberg et al., 1996), and some scholars speculate that they
metaphor that indicates more dynamism and miscellany, such as
may constitute “the most consequential effect of the internet on the
health information smorgasbord. Health-related knowledge can be
illness experience” (Conrad and Stults, 2010: 184).
garnered from an assortment of informational health websites,
This article examines one such online illness community. The
which may be operated by government (e.g., National Institutes of
analysis focuses on exchanges between ill people regarding how
Health), private entities (e.g., WebMD), disease-specific organiza-
they should comport themselves in clinical encounters and, more
tions and foundations (e.g., American Lyme Disease Foundation), or
generally, manage their relationship with medical professionals
private individuals and groups (see Cullen, 2006). There are also
and institutions. The aim is to contribute to sociological literature
major online repositories of peer-reviewed medical research liter-
on patient empowerment and consumerism (Lupton et al., 1991) by
ature, such as PubMed. In addition to these more “static” sites,
illuminating the various social skills that patients encourage one
laypeople have the ability to place information related to health on
another to hone. Drawing from Michael Polanyi’s (1966) distinction
the internet through personal blogs, social media, and forums in
between explicit and tacit knowledge, the analysis shifts the focus
online illness communities and support groups (Barker, 2008;
from the phenomenon of patients using the internet to collect
Lewis, 2006; Slaughter et al., 2010). Taken in total, this miscellany
“explicit” knowledge about conditions (i.e., facts about symptoms
of sources has earned everything from derisive skepticism,
begrudging acceptance, and enthusiastic endorsement from health
E-mail address: dmfoster@umich.edu. professionals (Gage and Panagakis, 2012).

http://dx.doi.org/10.1016/j.socscimed.2016.08.007
0277-9536/© 2016 Elsevier Ltd. All rights reserved.
26 D. Foster / Social Science & Medicine 166 (2016) 25e32
Research on the impact of the internet on the illness experience
suggests that the internet has an overall empowering effect on
patients: the vast informational resources and potential to connect
with others that the internet offers can inform patients about
health conditions and treatments (Kivits, 2009), advance their
ability to engage in self-monitoring and self-care (Lupton, 2013),
bolster their feelings of self-efficacy (Broom, 2005; Willis, 2016),
make them more likely to collaborate on decision-making with
their doctors (Seçkin, 2010), grant them the moral authority to
challenge medical expertise (Barker and Galardi, 2011), and much
more. On balance, these same resources can also increase patient
anxiety and perpetuate distorted or downright unfactual informa-
tion about certain conditions (see Ziebland and Wyke, 2012).
Furthermore, all of these findings only apply to those patients who
have internet access and choose to use it for health-related reasons.
Health-related internet use is less prevalent amongst men, racial
minorities, people over 65, people without a college degree,
working class people, and the uninsured (Fox and Duggan, 2013).
While the negative and demographically unequal impacts of the
internet on patients deserve continued scrutiny from scholars, it is
safe to say that social science research has focused on the potential
for the internet to empower patients by documenting the various
ways that it enhances their potential relative agency.
Taken together, this literature suggests that internet-derived
patient empowerment emanates from two main sources: peer-to-
peer social support and knowledge about conditions. In what follows I
review social science scholarship on these two sources to specify
how they function to empower patients. Then, drawing from
Polanyi’s (1966) distinction of explicit and tacit knowledge, I
introduce the idea of “tacit healthcare knowledge” as a third, less
well documented source of empowerment available to patients on
the internet.
1.1. Peer-to-peer social support
Through Web 2.0 media such as social networking sites, blogs,
and online illness communities, the internet has shifted the expe-
rience of being ill from a private affair to one that can be both
private and public (Barker, 2008; Conrad and Stults, 2010). Several
scholars have documented how this shift to a semi-public sick role
has resulted in a surge of inter-patient social support (e.g., Gage and
Panagakis, 2012; Krause, 2003; Lupton, 2014; Ziebland and Wyke,
2012). By “social support” I mean what Krause (2003) defines as
“the exchange of resources between two or more individuals,
perceived by the donor as well as by the receiver as being directed
to foment the well-being of the receiver” (601). In the context of
illness, patients can offer social support to one another through
expressions of real empathy about the trials of a given condition,
comprehensive discussion of treatment options, and frank evalua-
tions of clinical experiences.
Emotional support is one of the central forms of support that
patients and their caregivers offer one another online. Expressions
of warmth and commiseration intended to comfort another indi-
vidual have been found to be the most common type of expression
in online support communities for groups ranging from pregnant
women (Drentea and Moren-Cross, 2005) to people suffering from
complex regional pain syndrome (Smedley et al., 2015). For
example, Gage and Panagakis (2012) found that parents of pediatric
cancer patients rarely relied on the internet for cancer-related in-
formation, but many used it to connect with other parents, ex-
change moral support, and communicate with family members en
masse about their child's condition. Similarly, Gundersen (2011)
followed Norwegian parents of children with rare genetic disor-
ders and found that the empathy and emotional support from other
parents online was described as invaluable in the face of dramatic
uncertainty about their child's health. These examples suggest that
the emotional toll that illness can take may be managed by inter-
acting with people in similar circumstances.
The online format also allows people to speak about the realities
of their illness in more frank ways than they might in person. While
women tend to communicate in a more emotionally oriented
manner online (Boneva and Kraut, 2002; Drentea and Moren-Cross,
2005; Miyata, 2002), scholarship has shown how the more anon-
ymous medium of the internet enables men and women alike to
speak about the emotional impact of their illness in ways that they
would hesitate to in face-to-face situations (Broom, 2005).
Furthermore, this limiting of inhibitions when amongst similar in-
dividuals has been shown to be particularly empowering for people
with stigmatized or contested conditions (Berger et al., 2005; Fox,
2008). For example, patients with fibromyalgia syndrome validate
one another's experiences as embodied and realdrather than “all in
their heads”din online support communities in the face of medical
doubt and social derision (Barker, 2008). Additionally, participation
in online support groups has been linked to decreased feelings of
shame and anxiety for people with “embarrassing” conditions such
as irritable bowel syndrome (Krause, 2003). It follows that the
internet constitutes a unique venue for patients to seek emotional
and informational support who would otherwise be too embar-
rassed, debilitated, or isolated to do so.
1.2. Knowledge about conditions
The arrival of the internet gave ill people the ability to access an
amassment of medical knowledge that was once located primarily
in health professionals’ heads and in medical books and journals
(McKinlay and Marceau, 2008; Boyer and Lutfey, 2010). In an
important monograph, Epstein (1996) uses the politics surrounding
the AIDS epidemic to demonstrate that the question of who can
claim legitimate jurisdiction over medical knowledge is of deep
consequence for the social construction of an illness. Internet ac-
cess effectively “democratizes” medical information (Anspach,
2011), making it availabledalbeit not necessarily decipher-
abledto lay people and professionals alike. This is an empowering
prospect for patients because it challenges longstanding hierar-
chical models of information giving in medicine and enables
enterprising patients to independently seek knowledge about their
conditions (Broom, 2005; Timmermans and Oh, 2010).
This ocean of medical knowledge, unruly and vast, has rightfully
been the subject of scholarship that explores its potential to
empower patients and their caregivers. Schaffer et al. (2007) show
how mothers of children with genetic disorders who collaborated
in online communities acquired traditional forms of “scientific lit-
eracy” (i.e., knowledge of biomedical concepts and terminology).
This competence enabled them to engage in more sophisticated
and calculating decision-making related to their children's treat-
ment (see also Gray et al., 2005; Griffiths et al., 2012). Ziebland
(2004) suggests, furthermore, that the internet not only offers pa-
tients useful factual information about cancer as a biological phe-
nomenon, but also the opportunity to engage in important sense-
making about the experience of cancer (see also Kivits, 2009). This
comprehensive knowledge about a given condition can enable
people to more effectively engage in self-health care and partner-
ship with health providers (Seçkin, 2010).
Indeed, by connecting with other patients and accessing infor-
mation online, patients can acquire a novel form of health expertise
(Barker, 2008; Barker and Galardi, 2011; Clarke et al., 2003; Krause,
2003; Nettleton et al., 2005). Barker and Galardi (2011) offer an
encapsulation of this phenomenon in their concept “connectivity.”
Connectivity is a way of knowing about illness derived from “an
experiential connection to illness and a virtual connection to others
 D. Foster / Social Science & Medicine 166 (2016) 25e32
who share that illness” (1353). They show how this potent com-
bination of lived, embodied illness experience and connecting with
others with a similar experience enhances patients’ ability to
challenge medical expertise. Through digital connection with
similar others, patients can become “experts without expertise”
wielding a comprehensive set of knowledge about their illness.
Indeed, this knowledge has the potential to be what Wynne (1991)
described as “less generally authoritative but more specifically ac-
curate than that held by their physician” (114).
1.3. From explicit to tacit knowledge
The knowledge generated from connectivity and from infor-
mational health websites is concerned with facts about conditions
(i.e., symptoms, diagnosis, disease progression, treatment options,
etc.). However, some research suggests that the internet offers an
additional form of empowering knowledge for patients about how
to effectively interact with medical professionals and institutions in
a market-oriented health system. For example, Caiata-Zufferey
et al. (2010) found that some patients reported using internet
research to help prepare for consultations and to be better able to
explain their symptoms (1054). Internet resources can also help a
patient know when to seek a second opinion (Ziebland et al., 2004),
when to switch to a more sympathetic provider (Griffiths et al.,
2012), or when to stick with the one they have (Lee, 2008). Thus,
where the first type of knowledge reviewed in this article is
constituted by details about conditions and how to manage them,
this latter type of knowledge pertains to details about the medical
enterprise itself and how to optimize one's relationship with it.
Polanyi’s (1966) distinction between explicit and tacit knowl-
edge is a useful theoretical tool for understanding the distinction
between these two forms of lay health-related knowledge. Explicit
knowledge is knowledge comprised of facts and propositions that
can be documented, codified, and articulated with relative ease
(Nonaka and Takeuchi, 1995; Patel et al., 1999). It is often produced
by logical deduction and verifiable by evidence (Polanyi, 1958). In
contrast, tacit knowledge is comprised of skills, ideas, and experi-
ences (Chugh, 2015). It is less concrete, deeply rooted in action, and
therefore more difficult to transfer from one subject to another
(Polanyi, 1966). This distinction is sometimes described as the dif-
ference between the propositional “knowing that” (explicit) and the
behavioral “knowing how” (tacit), and the extreme version of this
framework posits that the two are nothing short of separate,
analytically distinct species of knowledge (Ryle,1945; Stanley, 2011).
Working from this theoretical structure, this research examines
how patients exchange “know-how” about how to go about
engaging with medical professionals and institutions. Through a
close study of a prominent online illness community, I show
howdover and above the exchange of facts about biological,
physiological, and psychological aspects of their health con-
ditionsdpatients offer experiential knowledge about how best to
deal with the healthcare enterprise. I argue that this miscellany of
advice should be understood as “tacit healthcare knowledge” and
suggest that it is analytically distinct from explicit knowledge about
conditions. I isolate and describe three categories of tacit healthcare
knowledge that are common to the online community under ex-
amination and discuss their implications for studies of patient
consumerism and of experiential expertise. Though interactional
skills for clinical encounters are infrequently the focus of research
on the internet's capacity to empower patients, they constitute a
potentially powerful source of agency and leverage for ill people.
2. Data & methods
The data for this study come from a prominent online illness
27
community called HealingWell. Online illness communities are
websites where ill people and their caregivers convene to collab-
orate, commiserate, and find information about specific conditions
and symptoms. Communication at these sites takes place mainly
via message boards (also called forums), and some sites also offer
chat rooms, blogs, and symptom logs. Some online illness com-
munities are managed by corporate entities or patient organiza-
tions, and others are owned and operated by individuals. Some are
private or “closed,” requiring people to register with the site before
viewing members’ discussions, and others are public and open to
anyone to read or participate in conversations.
The community under study in this research, HealingWell, was
established in 1996 and is one of the largest non-corporate illness
communities on the internet. It is populated by over 150,000
registered members (HealingWell website). The community in-
cludes 32 English-language message boards that each focus on a
different condition or set of conditions. The site also features a chat
room, blog, informational resources for various conditions, a
bookstore, and a newsletter. A distinguishing feature of this com-
munity is its focus on patient-to-patient exchanges rather than
advocacy efforts. HealingWell is open to the public, which means
that non-registered members can freely access the resources
available on the website and read the discussion being conducted
on the message boards. After obtaining permission from the site
owner, I observed the community without engaging in the dis-
cussions taking place between members or announcing my pres-
ence, rendering me an invisible observer (Kozinets, 2009). (For a
comprehensive discussion of methodological and ethical implica-
tions of nonparticipant observation in online illness communities,
see Barker, 2008.)
2.1. Methodological considerations
In online social spaces, which are mostly textual, the line be-
tween ethnographic observation and archival analysis is blurred.
Some scholars (e.g., Langer and Beckman, 2005) have cast ethno-
graphic studies of internet communities as nothing more than
glorified archival analysis. After all, the internet is “textual,
nonphysical, social-cue-impoverished” (Kozinets, 2006), and
therefore resistant to typical ethnographic strategies of study.
Conversely, others argue that processes of meaning-making and
cultural production are central to online communities despite the
fact that actors are not interacting “in real life,” and they should be
treated as distinct cultures and studied accordingly (Hine, 2000;
Miller and Slater, 2000; Puri, 2007).
I maintain that both overly textual and overly cultural concep-
tualizations of online social spaces miss the methodological point.
Virtual communities like HealingWell are simultaneously static
archives of social action meriting systematic archival-style research
and living, active social spaces with their own rituals, organizational
schemes, and modes of interaction. Treating online communities as
mere textual residue defuses the researcher's ability to detect and
analyze relevant cultural nuances that develop in situ and, more
generally, to see the community as a whole system (Kozinets,
2006). Conversely, treating them as impossibly complex cultural
systems limits the researcher's ability to exploit the unique fact that
the entirety of social action occurring at these places is logged and
stored (Sade-Beck, 2004). Indeed, this aspect of online social space
counteracts an inherent challenge of traditional ethnography: that
the researcher cannot possibly observe everything that is occurring
in the study site at any given moment (Wolcott, 1999). Methods
that draw out the benefits of both approaches are therefore ideal.
Accordingly, the methodological strategy for this study com-
bines nonparticipant observation with archival analysis. I spent 12
months (September 2014 to August 2015) conducting formal
28 D. Foster / Social Science & Medicine 166 (2016) 25e32

observations at HealingWell. The community forums constitute the (HUM00094032). All quotations have been copied directly from the
interactional locus of the community, so my observations were web. Spelling and mechanical errors have been retained from the
centered on the social exchanges taking place there. I produced original, and abbreviations and jargon have been clarified in
weekly field logs during the study period to hone the focus of the brackets.
study and to document emergent themes in the data. At the end of
the observation period, I conducted an archival analysis of one
3. Findings
month's worth of message board discussions from selected forums
at HealingWell. Using the NVivo software package, I copied and
Remember that YOU are the client and YOU hire THEM! I would
analyzed all of the posts (N ¼ 1655) from August 2015 from three of
go back to your primary care doctor and ask for a referral to a
the most active and well-populated forums: Crohn's disease,
[gastroenterologist]. You definitely need a colonoscopy. If your
rheumatoid arthritis, and chronic pain.
surgeon tries to do any more surgeries, I would get a new one.
dCrohn's disease patient
2.2. Analytic approach

The analytic strategy approximates the “abductive analysis” As the above quotation illustrates, patients at HealingWell
approach to qualitative data (Timmermans and Tavory, 2012; encourage one another to see themselves as active consumers
Tavory and Timmermans, 2014). Abduction refers to an “inferen- rather than passive recipients of medical treatment. Taking this
tial creative process” in which researchers purposefully oscillate approach to one's healthcare is not intuitive, as it requires one to
their attention between their data and extant literature in order to develop and deploy particular skills, comportments, and sensibil-
contrast their empirical findings with existing theories ities. This section isolates and describes three generic techniques to
(Timmermans and Tavory, 2012: 170). For this study, I first coded which HealingWell members are routinely exposed. These tech-
passages from posts according to conceptual patterns I had iden- niques are each designed to optimize a patient's capacity to effec-
tified during the open observation period (see Barker, 2008: 25), tively maneuver through the healthcare system and to exercise
including perceptions of physician authority, lay appraisals of influence over their own health.
medical information, interpatient perceptions of credibility, and
modeling “best practice” patienthood. Next, I reviewed the litera-
3.1. Affect regulation
ture from a selective reading list I built from searches on the Pro-
Quest Sociological Abstracts database using keywords and phrases
It is common to find members at HealingWell advising one
from the initial coding stage. After identifying a new set of themes
another to refrain from becoming overly emotional in clinical en-
from that literature review (i.e., patient empowerment and lay
counters. Chronic conditions can lead to feelings of anxiety,
knowledge), I re-coded the data with a new sensitivity for these
desperation, and depression for patients (Thompson, 1986;
issues. This process guided a subsequent literature review in which
Campion, 1992). On the discussion forums there is a widely
I concluded that peer-to-peer social support and knowledge about
acknowledged temptation to appear “desperate for relief” from
conditions were the foci of research on patient empowerment from
symptoms as a means of communicating the debilitating effects of
the internet. This enabled me to craft the conceptual framework of
one's symptoms to one's clinician. However, the collective wisdom
the paper. I then conducted the more systematic archival analysis-
in the community suggests that this affective posture is not the best
style review of the August 2015 data, during which I identified and
long-term strategy. This is believed to be so because being very
formulated the three generic skill sets I describe in the Findings
emotional during clinical encounters can make a patient seem
section. This phase of analysis also confirmed that, indeed, the skill
challenging to collaborate with, thus limiting her agency. Hea-
sets I highlight appear in the data with a regularity that merits their
lingWell members therefore endorse a type of ostensible emotional
being described as ongoing patterns, rather than theoretically
control that I refer to broadly as “affect regulation.”
interesting anecdotes.
For people with chronic conditions, meetings with doctors can
Finally, before moving to the findings, some clarifications about
be high-stakes. Members at HealingWell often lament the pressure
the three selected conditions are in order. The conditions are each
they feel to communicate a great deal of information during
“chronic conditions,” meaning that doctors are unable to effectively
meetings with doctorsdwhich, for most patients in the US, are
cure or eliminate the symptoms. Of course, Crohn's disease (an
increasingly infrequent and short (O’Hara and Caswell, 2012).
inflammatory bowel disease), rheumatoid arthritis (an autoim-
Specifically, members report on the forums that they often become
mune disorder affecting joints), and chronic pain (a catchall for a
“flustered” and “emotional” in the face of succinctly and effectively
variety of pain-related conditions) each affect the body in distinct
conveying the details about their conditions, treatment effective-
ways. They are unified, however, by several hallmark characteristics
ness, and desires for new or additional treatment. They believe that
of chronic illness, such as greater likelihood of initial misdiagnosis,
effectively communicating such information can mean the differ-
frequent visits to doctors, necessity to visit specialists, and
ence between receiving desirable and more numerous treatment
increased susceptibility to psychiatric comorbidity (e.g., depres-
options or being disregarded and misunderstood by one's doctor.
sion) (Katon et al., 2007). Furthermore, I should make clear that
To avoid these undesirable outcomes, members of HealingWell
chronic conditions differ as a group from acute conditions in terms
coach each other to regulate their ostensible affective selves (a form
of treatment approach and the type of sick role people take on
of emotional labor [Hochschild, 1979]) in moments leading up to
when afflicted with them (Dumit, 2006; Glenton, 2003; Willis,
and during doctor visits. This example of one member on the
2016); these differences are nontrivial for this study, as they
Crohn's disease forum coaching another member on how to ex-
affect how patients seek information and social support, relate to
press herself to her physician is illustrative:
their providers, and make treatment decisions. Findings from the
selected patient groups, therefore, may not be readily generalized Go into that next visit as serene as possible. I understand that
to conditions that are more short-term in nature, to mental illness, you want to get in there and kick and scream and show [your
or to more medically contested conditions. doctor] how bad your flareups have been (believe me I've been
Before conducting this research I obtained ethical approval from there!) but the fact is she's not going to hear it if you say it that
the University of Michigan Institutional Review Board way. Let her know that the flareups are getting worse and not
 D. Foster / Social Science & Medicine 166 (2016) 25e32
better, but do it calmly and carefully and don't give her any
chance to think she's dealing with a maniac lol! You can do this!
Patients coach each other to engage in affect regulation both during
the meeting with the doctor, as in the above example, as well as
leading up to the meeting, as in the following example from the
rheumatoid arthritis forum:
You do sound super stressed and anxious about [your condi-
tion], try to relax and slow down (easier said than done for sure).
The best advice I've had is to deal with what you know right
now. There is a big world of “what ifs” out there that can over-
whelm you.
This member advises the distressed patient to avoid getting caught
up in uncontrollable elements of her illness and to “relax and slow
down” by focusing on what is at hand. By striving to stay calm
before and during medical encounters, in spite of the stress
inherent to being chronically ill, patients seek to preserve and
improve their relationship with their doctor.
Members who have been managing their conditions for several
years are likely to stress the advantages of building a long-term,
positive relationship with a doctor. For some, this entails avoiding
appearing “desperate,” “crazy,” or “furious” to their doctors and
specialists. “Being desperate can be misunderstood now days,”
explained one long-time pain patient to a new member. The new
member had been calling her pain management clinic in an
attempt to receive her diagnosis as early as possibleda behavior
that several members considered to be desperate. “Sometimes it
does take a few days for a drs office to call you back. What your pain
dr thinks of you should be important, because that will have an
influence on how he treats you.” Here, the more senior member
highlights the material importance of regulating one's feelings of
desperation: doing so is likely to result in better treatment from
one's doctor and enable the patient to get what she or he is seeking.
Patients remind each other that failing to regulate one's affect in
front of one's doctor has consequences. These consequences
include developing an uncomfortable relationship with the doctor,
being blocked from discussions about treatment options, receiving
less personal attention from the doctor, and having desirable re-
ferrals to specialists withheld. These amount to a loss of options and
agencydor, put another way, a limiting of the patient's capacity to
act as an empowered consumer.
Many members at HealingWell worry that the ultimate conse-
quence of being overly emotional as the outright termination of the
physician-patient relationship by their doctors. An extreme version
of this consequence is not simply losing one's doctor, but being
“blacklisted” within a network of doctors and being unable to
receive any medical consultation whatsoever. A good example of
how this fear is perpetuated comes from a chronic pain forum
moderator who rebuked a new member who was seen by many as
“overreacting” to a physician's lack of attentiveness. After a long
exchange, the moderator warned,
Fact is your not entitled to anything and [your doctor] doesn't
have to see you at all since he has no obligation to you and can
drop you from his care at his choosing without ever giving you
anything and he could flag you so you would have a really
difficult time getting another Dr to even see you. You better calm
down and look for diversion techniques or something.
That a patient could be flagged in a way that results in their being
blocked from any future care was repeatedly cited as a potential
result of appearing “crazy” in encounters with one's doctor. What is
29
notable is that this forum moderator's suggested means of avoiding
this consequence was to “calm down and look for diversion tech-
niques.” Here again, tempering one's emotions is characterized as
an asset in maintaining a delicate physician-patient relationship.
3.2. Information management
At HealingWell, one's medical record is recast as an implement
of patient agency rather than a static, bureaucratic document. Pa-
tients with chronic conditions often have to move between a
general practitioner and one or more specialists. Each clinical
encounter yields new information about the progression of the
patient's condition and treatment, and one's medical records
become a potential means of communication between medical
professionals. Enterprising patients at HealingWell take the circu-
lation of these documents seriously and advise one another to be
active in facilitating communication between their doctors through
this document. “Keep the communication lines open between all
your doctors/specialists. Make sure every other doctor sends their
report to your [rheumatologist],” advised one arthritis patient.
Other members encourage periodically obtaining and reviewing
one's own medical records and reports (e.g., MRI reports) to have a
clearer sense about which medical details are considered relevant
by their doctors.
It is unclear if injecting oneself into the standard practices of
medical record keeping makes a difference in information ex-
change between clinicians, but members can gain a greater sense of
empowerment by being tuned into the details and distribution of
their records. There is a belief that those who can effectively collect,
organize, recall, and frame the details of their medical history are
advantaged. In this section of findings, I describe a miscellany of
techniques advanced at HealingWell that fall under the umbrella
that I refer to as “information management.”
Being an effective information manager requires not only
attending to the flow of medical information between one's clini-
cians, but also between oneself and one's clinician. Fastidious
recording and reviewing of information received from trusted
doctors is considered by many at HealingWell to be best practice.
For example, a member of the Crohn's disease forum was having a
hard time reporting the new information he had recently received
from his doctor about a trial medication he was prescribed, and a
moderator softly corrected his approach:
You've GOT TO bring in your notepad and pen when you get in
there for the followup. You're the only one who's responsible for
monitoring your reactions [to the new prescription], side effects
etc, so you need to know what to look for. Sometimes gastro
docs give you a ton of information in a few minutes and you
need to be able to catch all of it and then go back over it when
you get home.
Writing down, filing, and organizing information received during
clinical encounters was cited as a necessary, albeit troublesome
task for patients with chronic conditions. Above the practical value
of having important medical information on hand, the practice was
often construed as a part of the larger project of “taking charge” of
one's health.
In addition to managing the information they receive from
medical professionals, patients also see themselves as responsible
for the information they give to doctors. Specifically, patients dis-
cussed attempts to keep organized the details of their symptoms
(i.e., timing, frequency, and severity) in a way that would be
compelling or useful for their doctors. A common situation was a
patient questioning the effectiveness of the type or dosage of their
long-time medication and desiring to approach their clinician
30 D. Foster / Social Science & Medicine 166 (2016) 25e32

about changing it. Members in this situation were typically advised besides aspirin and methotrexate? That seems woefully inade-
to “write it all down” before meeting with their doctors. Several quate and outdated as a therapy … unless there's a compelling
days' worth of documentation of the point in the day that the ef- reason for keeping you on your current medication, I would look
fects of a medication began to wear off, for example, or when side into getting a new rheumie.
effects began to set in was seen as significantly more valuable than
one's off-the-cuff recollection.
A variety of patient-consumerist behaviors are being endorsed in
The practice of documentation also helps patients develop and
this excerpt. First, the commenter encourages the patient to exer-
organize the details about their condition that they want to relay to
cise agency in appointment scheduling and requests for medical
their doctor. As one chronic pain patient encouraged another, “If
tests. Then, she instructs the patient to be persistent in seeking a
you have to take in a piece of paper with your talking points, do it. I
treatment stronger than methotrexate by way of changing spe-
make notes and keep them together so that I ask all of what I need
cialists if necessary.
to[,] as when I get in there I completely forget (which is not unusual
In some cases, treatment persistence means not simply
for me) everything.” I also observed examples of patients advising
aggressively seeking a different medication, but appealing to doc-
each other to bring current pill bottles and recent photographs of
tors to change the entire approach to one's treatment. The
visible symptoms as forms of giving information to clinicians.
following exchange initiated by a man who suffers from a range of
Capturing and harnessing information about one's health is,
conditions, including pancolitis, Crohn's disease, and ulcerative
therefore, a means for industrious patients to better get what they
colitis, illustrates this strategy. The member had been managing his
want from the medical enterprise.
pain with prescribed pain patches and came to the chronic pain
forum to ask about how to approach his physician about increasing
3.3. Treatment persistence the dosage. However, a forum moderator who had been following
this man's story for several months took the opportunity to implore
Persistence is seen by many at HealingWell as their most valu- him to instead seek surgical removal of his pancreatic tumors,
able strategy in receiving appropriate and high-quality medical which she supposed were the root of much of his pain.
treatment. This strategy is particularly important when it comes to
Instead of contacting your insurance for additional Fentanyl
obtaining a proper diagnosis, which is often a complicated and
[pain patches], I would be asking my PCP, surgeon, and PM [pain
lengthy process for community members. Simply having one's
management specialist] to do whatever means necessary to get
suffering recognized through official diagnoses is relieving and
your surgery precertified for payment. They can push this
empowering (Dumit, 2006), and members of HealingWell
through. It's life and death … not wait and see. You've got to
encourage persistence on this front. An illustrative instance is when
PUSH and PUSH your way to the OR [operating room], not the
a veteran member expressed concern that she may be suffering
drug store!
from an additional condition beyond her rheumatoid arthritis. A
newer member urged her to reiterate her symptoms in detail to any
clinician with whom she came into contact. The new member, a This comment shows how patients remind each otherdsometimes
long-time arthritis sufferer, recounted how that strategy had led in radical waysdthat they are not beholden to the treatment
her doctor to give her an additional diagnosis of degenerative disc regimen prescribed to them by medical professionals. The message
disorder. “Keep complaining til someone listens and orders addi- to patients is that they should not be passive or complacent, but
tional tests,” she told the veteran member. “I had no reason to active and persistent in seeking medical treatments and diagnoses.
suspect [degenerative disc disorder], but it's very common without
knowing it … Keep asking … yes tell your orthopedic doc, tell
4. Discussion
anyone who will try to help … Keep trying!”
The next day, another member with a similar history of multiple
These findings demonstrate that patients can be exposed to a
conditions and years of incomplete diagnoses commented to reit-
wide variety of social skills in online illness communities. “Veteran”
erate the importance of this type of persistence. “It is easy to get
patients (Willis, 2016) disseminate these skills by offering consul-
fatigued by having to see specialist after specialist but I would
tation, encouragement, and guidance intended to help one another
rather this than one Doctor trying to treat issues they have little
more effectively interface with medical professionals and in-
knowledge or training in. That was why it took me so long to be
stitutions. Built into the advice, encouragement, and tips for how to
diagnosed years ago. I wouldn't wish it on anyone,” he commented.
approach the health system is the presumption that patients have
Particularly for people with multiple chronic conditions, then, be-
potential agency that can be strategically exercised in clinical en-
ing persistent in treatment often means deliberately seeking out
counters. However, to tap into this source of empowerment, they
and passing through a gauntlet of specialists.
must first know how to use certain skills. I argue that the skills
Once they receive a diagnosis, patients encourage one another
described above can be usefully understood as discrete forms of
not to settle for treatments that fail to adequately lessen their
tacit healthcare knowledge.
symptoms and suffering and to be persistent in their pursuit of the
Again, explicit knowledge refers to the propositional “knowing
best possible treatment. Passivity is discouraged. For example, a
that” and tacit knowledge refers to the behavioral “knowing how”
new member of the community inquired about a possible
(Polanyi, 1966). To be sure, members at HealingWell routinely
connection between the medications he'd been prescribed for
offered explicit knowledge about their condition (i.e., factual details
rheumatoid arthritis and the new lymphoma-like symptoms he
regarding symptoms, diagnosis, and treatments). Succinct com-
had begun experiencing. Another rheumatoid arthritis patient took
ments like this one about side effects of over-the-counter arthritis
the opportunity to encourage him to persistently seek a different
medications are common: “Glucosamine and chondroitin help
treatment:
rebuild cartilage and are often recommended for arthritis. These
With the symptoms you're experiencing, I would make an aren't [nonsteroidal anti-inflammatory drugs]. Some people report
earlier appointment with your rheumie [rheumatologist], in that they upset their stomach, but if they take with food it's fine.” It
addition to having the tests your regular doctor suggested. Is was also common for members to offer explicit knowledge by way
there a reason your doctor won't prescribe anything for you of relaying their own experience with a condition or treatment.
 D. Foster / Social Science & Medicine 166 (2016) 25e32
This knowledge about conditions and their treatments, while
potentially very significant for patients, should be understood as
separate from the knowledge exchanged about how to maneuver
through the healthcare world.
Where explicit health knowledge informs a patient's under-
standing of their condition, tacit healthcare knowledge informs a
patient's general comportment and presentation of self. For
example, it is notable that the three skill areas that came to light in
this study amount to a relatively comprehensive (albeit incom-
plete) toolkit for handling the diverse challenges of being a patient
today: Affect regulation acknowledges and addresses the emotional
toll illness can take on patients; information management equips a
patient to handle some of the byzantine bureaucratic aspects of
modern healthcare; and treatment persistence opens the door for a
more active role in the long-term management of one's condition. A
unifying feature of these skills is their potential to advantage pa-
tients in their capacity as consumers of health services.
Indeed, it is likely that patients who are able to take up and
practice these skills will become more effectual patient-consumers.
Patient consumerism is a well-established conceptual framework
that suggests patients resemble relatively agentic buyers in an
increasingly market-oriented health system who can exercise
active decision-making about their health and partnership with
health “providers” (Reeder, 1972; Conrad and Leiter, 2004; Conrad,
2005). The internet has already been identified as a facilitator of
consumerist dispositions among patients (Timmermans and Oh,
2010). Others have specified that, for example, online physician
ratings (Verhoef et al., 2014) and web-based, direct-to-consumer
pharmaceutical advertising (Kim, 2015) significantly impact how
patients act like consumers. This study's findings, then, add to this
literature by demonstrating that there are also specific consumerist
skills to be gleaned from the internet for savvy patients. To better
operate as patient-consumers, patients can benefit not only from
explicit knowledge of the range and standard of treatment for their
condition, but also tacit knowledge of how to go about negotiating
with their providers to gain access to their preferred treatment.
That tacit healthcare knowledge is produced and disseminated
by laypeople is important. Due to this feature of tacit healthcare
knowledge, it could rightfully be characterized as a constituent of
experiential expertise (Collins and Evans 2002; Wynne 1991)da
type of expertise that laypeople acquire through repeated experi-
ence with some phenomenon. In this case, though, the relevant
experiential connection is not to being ill per se, but rather to
interfacing with medical professionals and institutions. People with
chronic conditions in particular tend to visit doctors frequently, so
the know-how that some of them possess about effectively
engaging with the medical sphere could well be described as
“expert-like.” These findings suggest that experiential expertise in
patients is not limited to expertise regarding the biological, phys-
iological, and psychological aspects of their illnesses, but that it
extends to the social skills of managing relationships with the
medical professionals and institutions that treat those illnesses. Put
another way, explicit and tacit knowledge related to one's health
seem to be two interconnected parts of the experiential expertise
that laypeople can and need to acquire to function as empowered
patients.
Finally, knowledge possessed by laypeople is sometimes at odds
with that produced by credentialed experts (Barker and Galardi,
2011; Epstein, 1996; Wagner, 2007). Previous research suggests
that when lay people acquire explicit health-related knowledge
(i.e., when they become versed in facts about a condition) the
artificial divide between lay people and medical experts is dimin-
ished (e.g., Clarke et al., 2003; Nettleton et al., 2005). However, tacit
healthcare knowledge as it has manifested in this study seems to
function to lubricate laypeople's relationship with medical experts.
31
A more cynical interpretation of this finding might suggest that
tacit healthcare knowledge can serve to augment a layperson's
ability to manipulate healthcare providers toward their desired
ends (e.g., different or increased treatments, referrals to specialists,
etc.). In either view, it is noteworthy thatddespite formal differ-
encesdtacit and explicit knowledge both tend to function to lead
patients into positions of greater leverage vis-a-vis experts.
5. Conclusion
A number of caveats are in order. First, what these data cannot
clearly demonstrate is if people actually use the skills discussed on
the message boards. While there is some evidence that members
are indeed engaging in treatment persistence, information man-
agement, and affect regulation after being advised to do so at
HealingWell, it is unclear if they are doing so as a direct result of
this advice. More research needs to be conducted to determine if
exposure to tacit healthcare knowledge actually changes patients'
behaviors. Second, the skills identified in this research are most
relevant for patients with chronic conditions; patients with acute,
fatal, stigmatized, or medically unexplained conditions may benefit
from different forms of tacit healthcare knowledge, so research that
compares condition types is in order. Third, the framing of this
paper does not take into account the problem of digital inequality:
in the US, about a quarter of households don't have internet access,
and at-home Internet access is negatively correlated with age, in-
come, and education level (File and Ryan, 2014). Finally, a prevalent
assumption in the HealingWell community is that for patients to
have to a high degree of freedom in healthcare decisions is positive.
The analysis of this paper left this assumption unquestioned, but
recent research indicates that only a small majority of patients
(between 53 and 71 percent) see shared decision-making as
beneficial (Smith et al., 2016). Thus, it is likely that people who
participate in online illness communities disproportionately
represent patients who are inclined toward more agentic or
consumerist dispositions. Other patients with the same conditions
may find the tacit healthcare knowledge described here irrelevant
or troublesome.
The dimensions of patient empowerment (and disempower-
ment) in the digital era are several and complex. The internet, with
its redistribution of expert medical knowledge through informa-
tional resources and facilitation of peer-to-peer collaboration
through virtual social spaces, has irrevocably changed what it is to
be a patient. This article has identified and illuminated one key
feature of this change and considered its relation to themes in the
study of health and the internet, including patient consumerism,
lay knowledge, and experiential expertise. Understanding how
patients go about utilizing the modern resources at their disposal to
determine how best to manage their health and to approach the
medical enterprise to aid in that lifelong human endeavor is
important. The type and relative volume of tacit healthcare
knowledge a given patient possesses may well have a significant
influence on if that patient receives high-quality care, but further
study of this new concept is required.
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