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HEALTH, TECHNOLOGY AND SOCIETY
Digital Healthcare
and Expertise
Mental Health and
New Knowledge Practices
Claudia Egher
Health, Technology and Society
Series Editors
Rebecca Lynch
Wellcome Centre for Cultures and Environments
of Health
University of Exeter
Exeter, UK
Martyn Pickersgill
Usher Institute
University of Edinburgh
Edinburgh, UK
Medicine, health care, and the wider social meaning and management of
health are undergoing major changes. In part this reflects developments
in science and technology, which enable new forms of diagnosis, treat-
ment and delivery of health care. It also reflects changes in the locus of
care and the social management of health. Locating technical develop-
ments in wider socio-economic and political processes, each book in the
series discusses and critiques recent developments in health technologies
in specific areas, drawing on a range of analyses provided by the social
sciences. Some have a more theoretical focus, some a more applied focus
but all draw on recent research by the authors. The series also looks
toward the medium term in anticipating the likely configurations of
health in advanced industrial society and does so comparatively, through
exploring the globalization and internationalization of health.
Claudia Egher
Digital Healthcare
and Expertise
Mental Health and New Knowledge
Practices
Claudia Egher
Department of Health, Ethics and Society
Maastricht University
Maastricht, The Netherlands
© The Editor(s) (if applicable) and The Author(s) 2023. This book is an open access publication.
Open Access This book is licensed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits use, sharing,
adaptation, distribution and reproduction in any medium or format, as long as you give appropriate
credit to the original author(s) and the source, provide a link to the Creative Commons licence and
indicate if changes were made.
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permitted use, you will need to obtain permission directly from the copyright holder.
The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication
does not imply, even in the absence of a specific statement, that such names are exempt from the relevant
protective laws and regulations and therefore free for general use.
The publisher, the authors, and the editors are safe to assume that the advice and information in this book
are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or
the editors give a warranty, expressed or implied, with respect to the material contained herein or for any
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Pte Ltd.
The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721,
Singapore
To Véronique
Series Editors’ Preface
The very technologies that (re)define health are also the means through
which the individualization of healthcare can occur—through, for
instance, digital health, diagnostic tests, and the commodification of
restorative tissue. This individualization of health is both culturally
derived and state-sponsored, as exemplified by the promotion of “self-
care.” These shifts are simultaneously welcomed and contested by profes-
sionals, patients, and the wider public. Hence they at once signal and
instantiate wider societal ambivalences and divisions.
This series explores these processes within and beyond the conven-
tional domain of “the clinic,” and asks whether they amount to a qualita-
tive shift in the social ordering and value of medicine and health. Locating
technical use and developments in wider socioeconomic and political
processes, each book discusses and critiques the dynamics between health,
technology, and society through a variety of specific cases and draws on a
range of analyses provided by the social sciences.
The series has already published more than 20 books that have explored
many of these issues, drawing on novel, critical, and deeply informed
research undertaken by their authors. In doing so, the books have shown
how the boundaries between the three core dimensions that underpin the
whole series—health, technology, and society—are changing in funda-
mental ways.
In Digital Healthcare and Expertise, Claudia Egher focuses on an area
that has attracted much promise, hope, and investment—but which nev-
ertheless remains less well studied than might be expected within the
social studies of medicine: digital mental health. This exciting mono-
graph considers compelling questions around the construction and medi-
ation of experiences framed often in psychiatry and beyond as “bipolar
disorder” within digital spaces, with particular analytic attention to the
performance and negotiation of expertise. It provides a bold analysis of
the reconfiguring of (the relations between) forms of online (and offline)
epistemic practices, performances of and claims to knowledge and exper-
tise, and understandings and experiences of the self. Through Digital
Healthcare and Expertise, Egher illustrates the complexities inherent to
shifting understandings and deployments of expertise relating to bipolar
Series Editors’ Preface ix
this book during the challenging times of the pandemic have been to a
large extent stimulated by them. I consider myself very lucky for having
made my first steps into STS under the close guidance of Wiebe Bijker,
and I am deeply grateful for his help and for everything that I have
learned from him. Thanks are also due to Ruud Hendriks, who inspired
my first sociological forays into mental health. The shortening and sharp-
ening of this book benefitted from the constructive feedback provided by
Tsjalling Swierstra, to whom I am very grateful. I was also inspired and
invigorated by the presentations and talks I have had over the years with
members of the Maastricht University Science, Technology and Society
Studies (MUSTS) group, of the Centre for Ethics and Politics of Emerging
Technologies (EPET), and of the Netherlands Graduate Research School
of Science, Technology, and Modern Culture (WTMC).
This book has also benefitted from the close reading and friendly feed-
back provided by very kind and generous friends. Hortense, Valentina,
Lisa, Simone, and Thomas, thank you so much for all your help!
Finally, I want to express my deep love and gratitude to my family and
friends, to those who have supported me through some pretty hard times
and with whom I have shared countless joyful and amazing moments.
Thank you for constantly reminding me that there is a life out there,
while also being understanding and accepting of my need to work. Mamă
şi tată, vă mulțumesc pentru ajutor şi susținere! Many thanks also to
Lucia and Christian for the wonderfully relaxing moments spent together!
One of my deep personal regrets is that Pa and my aunt Veronica are no
longer with us to witness this moment. Charlie, I am extremely grateful
that I could rely on your help and support throughout all the years that I
worked on this book and the study preceding it. Krijn and Raquel, thank
you so much for your friendship and for your willingness to read drafts,
double-check references, and help with the editing and any other issue
pertaining to my work for so many years now. Lori, thank you for your
friendship, for your patience, and for the constant and often last-minute
(sorry about that!) efforts to make my graphs and tables look better!
Andreea, Oana, PJ, Nico, Julia, Luat, Bart, Laura, Bogdan, Andrei,
Simona, Dina, Kosmas, Marith, Willemine, Dara, and Ricky, thank you
so much for your friendship! Much love and gratitude to Hortense—it is
no exaggeration to say that this book would not have been finalized, had
xiv Acknowledgments
xv
Praise for Digital Healthcare and Expertise
“The digital era sits on an unsteady amalgam of hype and doom scenarios con-
cerning the emancipating power of the Internet and the democratization of
expertise. Claudia Egher succeeds in astutely navigating these sweeping claims
to produce a more nuanced and complex picture of technologically mediated
knowledge production. Her relentless search for the how, who, and where of the
enactment of expertise on bipolar disorder online takes the reader on a journey
that shuttles between vast theoretical literatures on expertise and the power of
technology and culture to shaping it, and its actual performance. In the process,
she gives voice to the new experts of bipolar disorder, where user agency is rec-
onciled with choice architecture and solidarity persists, as a latent and stubborn
dimension of individualization and personalization.”
—Tamar Sharon, Professor of Philosophy, Digitalization and Society, Radboud
University Nijmegen
4 Tactical
Re-appraisals and Digitally Informed Hypotheses
About the Treatment for Bipolar Disorder109
5 Online
Expert Mediators: Expanding Interactional
Expertise145
6 Digital
Biocommunities: Solidarity and Lay Expertise
About Bipolar Disorder189
Index245
xix
List of Acronyms and Abbreviations
AA Alcoholics Anonymous
AI Artificial intelligence
AIDS Acquired immunodeficiency syndrome
APSA L’Association des Psychotiques Stabilisés Autonomes
BPS British Psychological Society
CESE Conseil Économique Social et Environnemental
CNSA Caisse Nationale de Solidarité pour l’Autonomie
DSM-5 Diagnostic and Statistical Manual of Mental Disorders,
5th edition
EBM Evidence-based medicine
ECT Electroconvulsive therapy
E-FOIA Electronic Freedom of Information Act
EIT Electronic and information technology
EMDR Eye movement desensitization and reprocessing
EMI Ecological momentary intervention
ERCIC Ethical Review Committee of Inter City Faculties, Maastricht
University
GDP Gross domestic product
GDPR General Data Protection Regulation
GEM Groupes d’Entraide Mutuelle
GIA Groupe d’Information Asile
GP General practitioner
GPS Global Positioning System
xxi
xxii List of Acronyms and Abbreviations
Fig. 3.1 Images of the upper and lower parts of NIMH’s website
(2016)90
Fig. 3.2 Images of the upper and lower parts of HAS’ online page on
the diagnostic and treatment of bipolar disorder 95
Fig. 3.3 Images of the upper and lower parts of HAS’ online page
dedicated to bipolar disorder as a chronic condition 96
Fig. 3.4 Image of the affordances—audio and reading ruler—of
a .pdf file provided by HAS 100
Fig. 5.1 Fragment from the first page of Natasha Tracy’s blog,
Bipolar Burble. Retrieved on January 8, 2019 174
Fig. 5.2 Fragment from the blog posts’ overview on Julie A. Fast’s
blog, Bipolar Happens! Retrieved on November 5, 2018 175
xxiii
1
Studying Expertise Online
I have this med down to a science. (…) You also cannot drink any water
after taking it until you wake up. You can take one swig of water here or
there but I try not to. One thing that has worked for me is not eating or
drinking anything from 9:30 until 12:30. This is a trial and error drug and
I have schooled my doctor on what works. (Watson, March 9, 2015, quote
slightly adapted to ensure anonymity)
As the online excerpt above suggests, the Internet has facilitated the
“participatory turn” (Prainsack, 2011) in healthcare, with a plethora of
online platforms and mobile health applications claimed to disrupt the
traditional distribution of knowledge and power between medical profes-
sionals and people diagnosed (Dedding et al., 2011; Eysenbach et al.,
2004). Yet, the term “participation” has turned out to be rather vague
(Nielsen & Langstrup, 2018; Wyatt et al., 2013), and it is not clear how
active such involvement with one’s health is or should be, nor whether
participation reaches as far as allowing people diagnosed to contribute to
the production of knowledge, and what such contributions consist of. At
the same time, by affording the wider circulation of scientific controver-
sies, the Internet has contributed to a growing public awareness about the
disagreements that often exist among experts and about the conditions of
Under Peter’s care the boy remained till the close of 1142, when,
as we have seen, he was sent to England in company with his uncle
Robert of Gloucester. Henry now entered upon a third phase of
education. For the next four years his uncle took charge of him and
kept him in his own household at Bristol under the care of one
Master Matthew, by whom he was to be “imbued with letters and
instructed in good manners, as beseemed a youth of his rank.”[1089]
This arrangement may have been due to the Empress, or it may
have originated with Geoffrey when he sent the boy over sea in the
earl’s company; for much as they differed in other matters, on the
subject of a boy’s training the two brothers-in-law could hardly fail to
be of the same mind. A well-balanced compound of soldier,
statesman and scholar was Earl Robert’s ideal no less than Count
Geoffrey’s; an ideal so realized in his own person that he might
safely be trusted to watch over its developement in the person of his
little nephew. As far as the military element was concerned, the earl
of Gloucester, with his matured experience and oft-proved valour,
was no less capable than the count of Anjou of furnishing a model of
all knightly prowess, skill and courtesy; and if Henry’s chivalry was to
be tempered with discretion—if it was to be regulated by a wise and
wary policy—if he was to acquire any insight into the principles of
sound and prudent state-craft—Robert was certainly, among the
group of adventurers who surrounded the Empress, the only man
from whom he could learn anything of the kind. The boy was indeed
scarce ten years old, and even for the heir of Anjou and England it
was perhaps somewhat too early to begin such studies as these. For
the literary side of his education, later years proved that Robert’s
choice of a teacher was as good as Geoffrey’s had been; the seed
sowed by Peter of Saintes was well watered by Matthew, and it
seems to have brought forth in his young pupil’s mind a harvest of
gratitude as well as of learning, for among the chancellors of King
Henry II. there appears a certain “Master Matthew” who can hardly
be any other than his old teacher.[1090]
[1093] Gerv. Cant. (Stubbs), vol. i. pp. 140, 141. Cf. Hen.
Hunt., l. viii. c. 29 (Arnold, p. 282). Joh. Hexh. (Raine), p. 159.
Rob. Torigni, a. 1149. The writer of Gesta Steph. (pp. 128, 129)
has a most romantic account of Henry’s adventures. Henry, he
says, came over with a very small force, and nothing to pay them
with except promises. He made an attempt upon Bourton and
Cricklade, and was repulsed; whereupon his troops all fell away
and left him so helpless that he was obliged to ask his mother for
some money. She had none to give him; he then asked his uncle
Gloucester, but the latter, “suis sacculis avide incumbens,”
refused. Then Henry in desperation appealed to the king,
beseeching his compassion for the sake of their kindred blood;
and Stephen at once sent him the needful sum. The trait is just
what might be expected in Stephen; but it is hard to conceive
Henry ever getting into such a plight; and the mention of Robert
of Gloucester as still alive shews there must be something wrong
in the story.
[1096] Joh. Hexh. (Raine), pp. 159, 160. Ralf had agreed to
give up his claims on Carlisle and accept instead the honour of
Lancaster for himself and the hand of one of David’s
granddaughters for his son; he promised on these conditions to
join David and Henry in an attack upon Lancaster, but was, as
usual, false to the tryst.
[1109] Ann. Winton. a. 1151 (Luard, Ann. Monast., vol. ii. pp.
54, 55).
[1111] Hist. Pontif. (Pertz, Mon. Germ. Hist., vol. xx.), p. 542.
[1114] Suger, Vita Ludov. (Rer. Gall. Scriptt., vol. xii.) p. 62.
Chron. Mauriniac. (ibid.) p. 83. Hist. Franc. (ibid.), p. 116. Ord.
Vit. as above. See also Besly, Comtes de Poitou, p. 137.
For Louis had now returned from Palestine;[1125] and so great was
his wrath at Geoffrey’s treatment of his favourite that he consented to
join Eustace in an attack upon the Norman duchy. Its defence was
left to its young duke, then busy with the siege of Torigni on the Vire,
held against him by his cousin Richard Fitz-Count—a son of Earl
Robert of Gloucester.[1126] Louis and Eustace marched upon
Arques; Henry led a force of Normans, Angevins and Bretons to
meet them; but his “older and wiser” barons averted a battle,[1127]
and nothing more came of the expedition. Geoffrey had never stirred
from his camp before Montreuil. Despite a formidable array of
engines,[1128] he made little progress; every breach made in the
walls by day was mended by night with oaken beams, of which the
besieged seemed to have a never-ending supply. Geoffrey was
characteristically taking counsel with his books as to the best method
of overcoming this difficulty when some monks of Marmoutier came
to him on an errand for their convent. One of them took up the book
which the count laid down— the treatise of Vegetius Renatus De Re
Militari, then, and long after, the standard work on military
engineering. It may have been some memory of bygone days when
he, too, had worn helm and hauberk instead of cowl and scapulary
that brought into the monk’s eyes a gleam which made Geoffrey
exclaim, “Stay with me till to-morrow, good brother, and what you are
now reading shall be put in action before you.” Next day a large red-
hot iron vessel filled with boiling oil was launched from the beam of a
mangonel against one of the timber insertions in the wall, and its
bursting set the whole place on fire.[1129] Gerald, his spirit broken at
last, came forth with his family and his garrison “like serpents
crawling out of a cave,” as a hostile chronicler says,[1130] and
surrendered to the mercy of the count, who sent him to prison at
Angers. The keep was razed at once, save one fragment of wall, left
by Geoffrey, and still standing at this hour, as a memorial of his
victory and of the skill and perseverance by which it had been won.
[1131]
[1129] Hist. Gaufr. Ducis (as above), pp. 286, 287. The monk is
called “frater G.” M. Marchegay suggests that he may have been
the “Gauterius Compendiensis,” monk of Marmoutier, whom the
writer names among his authorities in the Proœmium to his Hist.
Abbrev. (ib. p. 353). If so, this detailed account of the last scene
at the siege of Montreuil is due to an eye-witness.
The count of Anjou now moved northward to help his son against
the king. By the help of a brother of his old ally William Talvas he
gained possession of La Nue, a castle belonging to the king’s
brother Count Robert of Dreux.[1132] Louis and Robert avenged
themselves by burning the town of Séez. Presently after, in August,
Louis gathered together all his forces and brought them down the
Seine to a spot between Meulan and Mantes. Geoffrey and Henry
collected an opposing army on their side of the Norman border; but
an attack of fever detained the king in Paris, and a truce was made
until he should recover.[1133] The ostensible ground of the dispute
was Geoffrey’s treatment of Gerald of Montreuil, which certainly
seems to have been unjustly cruel. Not content with receiving his
unconditional surrender, razing his castle, and forcing him to make
full atonement to the injured monks of S. Aubin, Geoffrey still
persisted in keeping in prison not only Gerald himself but also his
whole family. The Pope anathematized him for his unchristianlike
severity;[1134] but anathemas usually fell powerless upon an Angevin
count. Geoffrey was in truth visiting upon Gerald his wrath at the
double-dealing of Gerald’s royal master; for he was well aware that
King Louis’s interference was prompted by far other motives than
disinterested sympathy for his seneschal. Louis was, according to
his wont, playing fast and loose with the rival claimants of Normandy,
in such shameless fashion that his own chief minister, Suger, had
been the first to reprove him in strong terms for his unwarrantable
attack upon the Angevins, had stood firmly by Geoffrey all through
the struggle, and was now endeavouring, through the mediation of
the count of Vermandois and the bishop of Lisieux, to baffle the
schemes of Eustace and his party and bring the king back to his old
alliance with Anjou.[1135]
[1137] Hist. Ludov., Rer. Gall. Scriptt., vol. xii. p. 127; Chron.
Reg. Franc. (ibid.), p. 213. Both these writers, however, tell an
apocryphal story of Louis, at Geoffrey’s and Henry’s request,
reconquering the duchy for them and receiving these
concessions in return for his help.
Geoffrey was but just entering his thirty-ninth year, and one can
hardly help speculating for a moment as to his plans for his own
future. For him, now that his work in the west was done, there was
no such brilliant opening in the east as there had been for Fulk V.
when he, too, in the prime of manhood, had chosen to make way for
a younger generation. But Geoffrey had begun public life at an
earlier age than either his father or his son; and he seems to have
had neither the moral nor the physical strength which had enabled
one Angevin count to carry on for half a century, without break and
without slackening, the work upon which he had entered before he
was fifteen, and to die in harness at the very crowning-point of his
activity and his success. Geoffrey Plantagenet was no Fulk Nerra; he
was not even a Fulk of Jerusalem; and he may well have been
weary of a political career which must always have been embittered
by a feeling that he was the mere representative of others, labouring
not for himself, hardly even for his country or his race, but only that
the one might be swallowed up in the vast dominions and the other
merged in the royal line of his ancestors’ Norman foe. He may have
seriously intended to pass the rest of his days among his books; or
he may have felt an inner warning that those days were to be very
few. With a perversity which may after all have been partly the effect
of secretly failing health, although he had now set Gerald at liberty
he still refused to acknowledge that he had treated him with unjust
severity, or to seek absolution from the Pope’s censure; and he even
answered with blasphemous words to the gentle remonstrances of
S. Bernard. “With what measure thou hast meted it shall be meted to
thee again” said the saint at last as he turned away; one of his
followers, more impetuous, boldly prophesied that Geoffrey would
die within a year. He did die within a fortnight.[1140] On his way home
from the king’s court,[1141] overcome with the heat, he plunged into a
river to cool himself;[1142] a fever was the consequence; he was
borne to Château-du-Loir, and there on September 7 he passed
away.[1143] His last legacy to his son was a piece of good advice,
given almost with his dying breath:—not to change the old customs
of the lands over which he was called to rule, whether by bringing
those of Normandy and England into Anjou, or by seeking to transfer
those of the Angevin dominions into the territories which he inherited
from his mother.[1144] Dying in the little border-fortress whence his
grandfather Elias had gone forth to liberate Maine, Geoffrey was
buried, by his own desire, not among his Angevin forefathers at
Tours or at Angers, but in his mother’s home at Le Mans.[1145] A
splendid tomb, bearing his effigy adorned with gold and gems, was
raised over his remains in the cathedral church,[1146] whence it has
disappeared to become a mere antiquarian curiosity in a museum.
Geoffrey’s sole surviving monument is the one which he made for
himself—the ruined, blackened fragment of his great ancestor’s keep
at Montreuil.
Stephen could not do what Geoffrey had done. His kingdom was
no mere fief to be passed from hand to hand by a formal ceremony
of surrender and investiture; the crowned and anointed king of
England could not so easily abdicate in favour of his son. He might
however do something to counterbalance Henry’s advancement by
obtaining a public recognition of Eustace as his heir. In Lent 1152,
therefore, he summoned a great council in London, at which all the
earls and barons swore fealty to Eustace.[1147] Still the king felt that
his object was far from being secured. He himself was a living proof
how slight was the worth of such an oath when the sovereign who
had exacted it was gone. There was, however, one further step
possible, a step without precedent in England, but one which the
kings of France had taken with complete success for several
generations past: the solemn coronation and unction of the heir to
the throne during his father’s lifetime. It was at this that Stephen had
aimed when he sent Archbishop Henry of York to Rome. He took an
unusually wise as well as a characteristically generous measure in
intrusting his cause to a reconciled enemy; nevertheless the attempt
failed. Pope Eugene by his letters absolutely forbade the primate to
make Eustace king; therefore, when Stephen called upon Theobald
and the other bishops to anoint and crown the youth, they one and
all refused. Father and son were both equally vexed and angry. They
shut up all the bishops in one house and tried to tease them into
submission. A few, remembering that “King Stephen never had loved
clerks,” and that it was not the first time he had cast bishops into
prison,[1148] were so frightened that they gave way; the majority
stood firm, and the primate himself escaped down the Thames in a
fishing-boat, made his way to Dover, and thence retreated beyond
sea.[1149] Without him there was nothing to be done, and of his
yielding there was no chance whatever; for close at his side stood
the real fount and source of the papal opposition—Thomas of
London.[1150]