knowledge creation and dissemination about contested illnesses in.ppt

7/27/2019 Knowledge creation and dissemination about contested illnesses in.ppt

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Knowledge creation anddissemination about contestedillnesses in Web 2.0 environments:A case study

Modena, October 12, 2012

Paola Catenaccio


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Dissemination of medical knowledge 2.0

Importance of the internet for Expert peer-to-peer communication expert-layperson communication Lay peer-to-peer communication (impact on the medical community?)

Impact of the Web on the sharing of medical information (Hachinski et al 2010; Ossebaard/van Gemert Pijnen/Seydel 2011) 2012 Patient Education and Counseling call for paper: patient empowerment

through HICT (Health Information and Communication Technology) as keyarea of future research

expert community building

sharing of experiences data collection

Internet as source of information on medical conditions expertknowledge, often in popularised form, but also lay information


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Lay expertise and impact on medicine

Growing body of studies on the impact of the Internet on the illnessexperience (Barker 2008; Conrad/Stults 2010; Pitts 2004)

With the expansion of the Internet, laypeople are becoming moreactively involved in producing and consuming knowledge about their

own health conditions; they are also increasingly likely to createand embrace new illness identities. Lay ways of knowing maysupplement medical knowledge and positively influence healthoutcomes (Brown 1992; Kroll- Smith/Floyd 1997) (Conrad/Barker2010: S73)


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Significance for contested illnesses

Laypeople create and join illness-based social movements, generatelay knowledge about their own medical condition, and forge newcommunities based on illness identities (Banks/Prior 2001; Brown etal 2004; Kroll-Smith/Floyd 1997)

Emergence of lay demands for medicalization or de-medicalization(Conrad/Stults 2010)

Increase in contested illnesses as a result (amongst other things) of the rise and spread of support groups as alternative arenas forlegitimating illnesses (Conrad/Barker 2010: S70)


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Why so important?

Socio-constructionist approach to illness and disease

Rooted in the conceptual distinction between disease(biological condition) and illness (social meaning of the

condition) (Eisenberg 1977)

Importance of discourse We can no longer regard diseases as natural events int he world

which occur outside the language in which they are described(Turner 1995: 11) Medical discourse can influence people s behaviours, impact

their subjective experiences of embodiment, shape theiridentities, and legitimate medical intervention (Foucault 1975,

1977) (Conran/Barker 2010: S69)


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Disease as a definitional construct

An illness must be framed in order to exist (Aronowitz2008)

Interactive (often lay-initiated!) definition-making as

crucial component in the construction of illness (Lock1988)

Diagnosis represents the time and location where

medical professionals and other parties determine theexistence and legitimacy of a condition. Diagnosis is amatter of the politics of definitions (Conrad/Schneider1992: 22) whereby illness designations are created fromsocial conflict (Brown 1995: 38)


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Diagnosis as legitimisation

Diagnosis locates the parameters of normality andabnormality , demarcates the professional andinstitutional boundaries of the social control andtreatment systems, and authorizes medicine to label anddeal with people on behalf of society at large. Thislabeling is often enough the legal basis for provision of health services, welfare benefits, unemploymentcertification, worker s compensation claims, and legaltestimony (Zola 1972; Brown 1990) (Brown 1995: 39)

Diagnostic categories are often fought out as turf battles between medicalizers and their opponents(Brown 1995: 39)


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Lay-initiated disease discovery

In some cases labeling is sought by people as a way to legitimatetheir condition (Brown 1995: 41)

the social construction of conflictual diseases involves lay (andusually a subsequent social movement) initiation of the discovery

process. Conflictual diseases are those [] in which lay discoveryconflicts with biomedical and other social authority. (Brown 1995:43)

Contested illnesses showcase the tension between lay and

medical knowledge with respect to the cultural legitimation of symptoms and suffering (Conrad/Barker 2010: S70)


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Diagnosis as a site of compromise andcontestation

Diagnosis is simultanously a site of compromise and contestationbecause it is a relational process. When there is a disconnectbetween the patient and the medical explanatory model, theindividual may be unsatisfied with treatment goal, and collectivelywant to politicize the illness through social movements. This wouldbe the case especially if people were not given a diagnosis forsomething which they expected to. (Brown/Lyson/Jenkins 2011:940)

popular epidemiology (Brown 2007) as lay response to scientific

truths from the medical community

public hypothesis (Krimsky 2002) challenges to scientificorthodoxy are shaped by public discussion in the media, socialmovement organizations, virtual communities, and other accessible

formats (Brown/Lyson/Jenkins 2011: 941)


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The illness experience as a defining andlegitimising factor

The social construction of illness deals with theillness experience . It has to do with a[n] interactionist approach to experience at personal,dyadic, and group levels. Here we are concerned withthe lay experience of illness. Rather than a singlebiomedical fact, we have a set of understandings,relationships, and actions that are shaped by diversekinds of knowledge, experiences and power relations,and that are constanly in flux (Brown 1995: 37)


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The role of Web 2.0 in the socialconstruction of illness

Internet forums as loci where illness identities areconstrued and illness experiences displayed(Conrad/Barker 2010: 51S)

Construction of a collective identity as experiencers of acontested illness crucial to its social legitimation


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Research on virtual forums

focus of a growing body of research

virtual ethnography (Henri 1992; Gunawardena et al 1997; Cohenet al 2000)

sentiment analysis (Sood et al 2007 but rising field, especiallyfor commercial purposes)

For the purposes of this research

Forum posts used as primary data Method applied: discourse analysis (plus corpus lingustics)


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Study Design

Selection of forums Webcrawler (ADHD forum)

three top sites: Additude

ADDforums ADHDnews
http://www.additudemag.com/adhdforumshttp://www.addforums.com/forums/index.phphttp://www.adhdnews.com/forum/forum.phphttp://www.adhdnews.com/forum/forum.phphttp://www.addforums.com/forums/index.phphttp://www.additudemag.com/adhdforums


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Research questions

What are the hottest topics? Most viewed Most responded to

Are there any correlations between popularity and controversy?

How is the illness represented/constructed? What kind of popularknowledge is created and disseminated?

Do users construct a community of practice?


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Sections/macrotopics

General issues relating to adults with ADHD (including relationshipissues) Medication issues

Alternative treatments Parenting / children with ADHD /Schooling etc. Coaching/Management (adults and children) Resources (scientific info etc)

Site-specific interests Expert questions (esp legal): (Additude) Specific area devoted to

diagnosis(Additude)

Comorbidities (ADDforums)


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What topics attract contributions?

Threads which attract responses can be divided roughlyinto two categories self -reinforcing threads where subsequent contributions

confirm and reinforce the initial claim [potentially] controversial issues

In both cases, priority is given to PERSONAL EXPERIENCES

Confirmation that the forums are about the experience of illness


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Example 1

1. Help me! Sooo-oo tired after fighting sleep all night. AGAIN! I'mdragging myself through the day after spending the whole of thenight awake fighting and fighting and fighting sleep. Why do I dothis? Does anyone else do this? Am I alone?

I've got Adult ADHD and I've been like this since I was a littlegirl. I remember reading and listening to the radio until 2 or 3 in themorning under the covers and my teachers telling me and myparents off because I was forever falling asleep in class. I'm middle-aged now and I STILL do it! I find I just can't settle down because I'm

so completely AWARE of everything around me - and my mind keepson running like some mad machine.


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Responses

In replies, advice (when given) is typically associated with restatement of problem (shared experience)

1.A Hi there, Sorry to hear of your trouble sleeping--sounds prettyfrustrating . I saw this article the other day which was really interesting tome.

http://www.additudemag.com/adhd/article/757.html (I guess you'llhave to cut & paste--the link didn't work)

I can totally relate to the 4am-12noon concept--it was really cool tosee that in there, as that's so ME! I never knew that a lot of other peopleare like that too. (unfortunately my schedule as a mommy doesn't enableme to follow that sleeping pattern, but maybe someday, hehehe....) I'mkind-of the opposite as what you described--I fall asleep the moment myhead touches the pillow, but I'd imagine that's because I'm often just sleep-deprived. Even though I almost always sleep all night, sometimes I'mfrustrated by waking up many times during the night, leaving me notfeeling rested. When I first started Adderall a few months ago, and nowVyvanse, it was annoying to lie there waiting to fall asleep (for probablyonly less than 5 minutes) and that was very eye-opening--literally!--(wow,that was a really cheesey pun, lol) to the plight of people who do sufferfrom real insomnia. I really feel for you with the difficulty sleeping, and I hope you can find something that works for you soon.


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Reinforcing responses

I too have problems with noise and have done for as longas I can remember So you aren't the only person who feels like this. And then I read your post and all I could think was that

could be me! I am not alone, there are others that havethe same or similar issues as me! Me, too. I have a hard time with noise also. I thought it was just me, I'm new to the site and fairly

new to the who ADD thing.


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Example 2

2. Do you tell people you have ADD? I am curious?

Does everyone in your life circle know you have AD/HD? If you found out as an adult,have you told people?I have read a lot on these forums, about people leary of telling employers..I wouldagree, not because I think its a bad thing , I think people are ignorant to their ownstandards, and feel you must astain a certain social ethic in the workplace, andobviously how could this be done if you had ADD?Well I am here to tell them all..that is crap ..I may not shout from the roof tops ..but I just passed my last set of boards, and I am off the hook ADD! I ampracticing, have had to issue getting liability for my practice, and feel proud to haveaccomplished this..those initials behind my name, were a proud moment..but now itsthe real world, and those who suffer more than I.But I am curious..if you have ADD, like I do..do you hide it from those you are closesttoo.. you see my husband knows me no other way..so is this what it is like forothers ? My daughter has ADD, and of course we act just alike, but he does not knowI am on meds . He thinks I am just me ..the girl who has to have the pillows neat,and the floor vacumed, three times a week.So, if you don't say anything, would they notice a difference on meds? maybe?Don't get me wrong, he could care less..we've been together 20 years..and not oncehas a day gone by, he doens't smile and say..YEP..thats why I love ya (for whateverrandom thing I am doing).So, if you feel you can...let me know..do you share?


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Subsequent responses

2.A I'm honest with those close to me.. the difference Meds have made in my life ispretty obvious..But to those who are not in my close circle.. it's none of their business

2.B I'm pretty open about it with friends. Honestly, I'm not ashamed of it - I thinkI've made some huge strides in my life since my diagnosis, and I'm not ashamed that Ihave ADD. I'm proud of what I've done and overcome.

I've been with my current company for 3 years, and have received a promotion andtransfer recently. Both my former boss and my current manager know about it. Myformer boss, I told her out of respect because I was going back on Strattera afterpregnancy and breastfeeding, so I wanted her to know that if I seemed 'off',hopefully, things would level out soon.My current boss, umm, well, I was drunk at a bar with him after a staff meeting . Iwas switched to Adderall from Strattera yesterday, and ended up telling him - thefunny thing is, I found out he's also on Adderall and is ADD - I should have recognizedit with his behaviors because we are very much alike. He also gives me hope that I'llmake as much as he does one day .I don't feel like I need to tell them, but for me, it's just a part of who I am. And Idon't use it as an excuse - if I screw up something at work, I screw it up, ADD or not.So I've made sure that both of my managers are aware that I'm not using it to excuseanything, but if I'm not acting like myself, it may be a result of a medicationadjustment and not just that I'm weird. Or I could just be weird.


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Progressive establishment of normativity

The first few contributions set the boundaries of the debate andoffer a limited number of alternatives

Subsequent contributions display alignment with one or otheralternative, usually in a non-polarised way

Co-construction of acceptable behaviour / symptom / problemthrough iteration

social construction of knowledge and/or acceptable behaviour


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Development of a sense of community

Contributions geared to establish convergent truths

When divergent thoughts are expressed, disalignment is silenced, orignored

Silencing Contributor vehemently against child medication Strongly contested by the community Eventually defined a troll

Ignored In a thread about dos/donts with people with ADHD Contribution by non-ADHD, thanking participants for sharing their

experiences Comment goes entirely unacknowldeged


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Additional insights from corpus analysis

Frequency lists may help uncover unexpected data

Es. thread on noise irritation

Frequent word: just (0.71%) used to manifest the

extent of the irritationN Concordance

2 Someone whistling drives me insane. I ust can't stand it. Clapping at a certain

3 find myself putting on the headphones ust because of the steady typing by one

4 headphones with no audio play ing ust to block out noise distractions. And

5 if I try to ignore it or block it out it ust frustrates me more and I become

6 If they eat their whole meal this way, I ust die inside of myself and try to close

7 and my problem does is under control, ust by will power. I may get irritated, but

8 it is high pitched. Certain ring tones ust make me want to crawl away and

9 and my problem does is under control, ust by will power. I may get irritated, but

10 it is high pitched. Certain ring tones ust make me want to crawl away and

11 trouble waking up in the morning that I ust sleep through everything if I have

12 while I can't get to sleep because I can ust barely hear it. Ear plugs are out of

13 see them and even then it bothers me ust knowing it's happening. I love loud

Someone whistling drives me insane. I ust can't stand it. Clapping at a certain

find myself putting on the headphones ust because of the steady typing by one

headphones with no audio playing ust to block out noise distractions. And

if I try to ignore it or block it out it ust frustrates me more and I become

If they eat their whole meal this way, I ust die inside of myself and try to close

and my problem does is under control, ust by will power. I may get irritated, but

it is high pitched. Certain ring tones ust make me want to crawl away and

and my problem does is under control, ust by will power. I may get irritated, but

it is high pitched. Certain ring tones ust make me want to crawl away and

trouble waking up in the morning that I ust sleep through everything if I have

while I can't get to sleep because I can ust barely hear it. Ear plugs are out of

see them and even then it bothers me ust knowing it's happening. I love loud


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Definitional issues (thread on scientificevidence )

N Concordance

42 article, you will also find on page 89: " ADHD is recognized as a

43 and shown any shred of evidence that ADHD is biological or genetic despite

44 described and not mentioned.. ".. ADHD is primarily thought", "Research

45 you objecting to Weiss's position that ADHD is a different brain structure but

46 is stating what the genetic cause(s) of ADHD is - if there is one. If it began in47 Psychiatry, 56:1073-1086;1999. ADHD is primarily thought to be largely

48 are theories. The current diagnosis for ADHD is 100% certain and does not

49 The exact etiology of ADHD is unknown. No one is claiming to

50 disorders. Someone post the proof ADHD is genetic, and biological. No one

51 kinds of strong evidence in adults that ADHD is metabolically hetrogeneous: (l)

52 talking about: " The exact etiology of ADHD is unknown,although

53 dopamine.It is suggested that because ADHD is a complex disorder with

54 is stating what the genetic cause(s) of ADHD is - if there is one. If it began in

55 post and commented on what I read. ADHD is the most researched "mental

56 posts with the same basic theme - that ADHD is not a real, is over-diagnosed, is

article, you will also find on page 89: " ADHD is recognized as a

and shown any shred of evidence that ADHD is biological or genetic despite

described and not mentioned.. ".. ADHD is primarily thought", "Researchou ob ectin to Weiss's osition that ADHD is a different brain structure but


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Definitional issues ctd

frequency of hedges Some (0.44%) Most (0.17%) Probable/y (0.10%) Actually (0.07%)

lf d f


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Self-definitionFrom thread on dos and dont s

N Concordance

1 this world for Neuro Typical people. I am at a significant disadvantage, and2 the thing I came here to add was.. . I'm impulsive, ok? Sometimes it results

3 he's working)...no one would do that, I'm sure! Money, not worth the small

4 say no because it's the evening and I'm happy and settled. But sometimes

5 it does depend. Or maybe it's becaue I'm only 19 and living at home with my

6 of the understanding and caring people. I am so very happy to meet you. You

7 not resemble a petting zoo because I am irresponsible, I have taken in those

8 memory etc. I can't think on the go. If I'm tired, don't ask me to do anything9 prior consultat ion. In the morning I'm running on autopilot, muscle memory

10 wasting time looking for things when I'm prolly already running late. Don't

11 start an argument, it will not end well. If I'm running late, don't use that time to

12 and I'll regain control soon enough. If I'm angry do not pick a fight or start an

13 Don't lecture me to control it either, I'm doing the best I can. Just leave me

14 for the situation. I'm well aware that I'm being overly emotional. Don't lecture

15 of my emotions for the situation. I'm well aware that I'm being overly

16 and his family, then a lifetime of boring! I am grateful forever, that he is in my life

17 even if I do most of the work at it, which I am willing to do. I would rather live my

18 wanting to give it another try. I hope I am still waiting, I may not be. He is an

19 my time whizzing. Stop asking me if I am nervous when I get a little fidgety.

20 to give a friend rides to work, and while I'm happy to help, it still ****es me off),

21 that if I'm not paying attention to you, I'm still happy to have you around. Do

this world for Neuro Typical people. I am at a significant disadvantage, andthe thing I came here to add was... I'm impulsive, ok? Sometimes it results

he's working)...no one would do that, I'm sure! Money, not worth the small

say no because it's the evening and I'm happy and settled. But sometimes

it does depend. Or maybe it's becaue I'm only 19 and living at home with my

of the understanding and caring people. I am so very happy to meet you. You

not resemble a petting zoo because I am irresponsible, I have taken in those

memory etc. I can't think on the go. If I'm tired, don't ask me to do anythingprior consultation. In the morning I'm running on autopilot, muscle memory

wasting time looking for things when I'm prolly already running late. Don't

start an argument, it will not end well. If I'm running late, don't use that time to

and I'll regain control soon enough. If I'm angry do not pick a fight or start an

Don't lecture me to control it either, I'm doing the best I can. Just leave me

for the situation. I'm well aware that I'm being overly emotional. Don't lecture

of my emotions for the situation. I'm well aware that I'm being overly

and his family, then a lifetime of boring! I am grateful forever, that he is in my life

even if I do most of the work at it, which I am willing to do. I would rather live my

wanting to give it another try. I hope I am still waiting, I may not be. He is an

my time whizzing. Stop asking me if I am nervous when I get a little fidgety.

to give a friend rides to work, and while I'm happy to help, it still ****es me off),

that if I'm not paying attention to you, I'm still happy to have you around. Do


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N Concordance

1 times in my life. Yes, I forgot again. No, I'm not doing it in purpose. What? I'm2 sometimes when that happens he says I'm not spontaneous enough!! Which

3 everything, but it 's nice to hear that I'm not crazy. Thanks for sharing.

4 and 17 minutes ago. Do realize that if I'm not paying attention to you, I'm still

5 what rubbish am i watching on the tele- I'M NOT WATCHING IT. I really enjoyed

6 friends in the world 6 Do be patient... I'm not always on the same planet 7 Do

7 life' etc 3 Don't treat me like an idiot... I'm not without intelligence 4 Don't t reat

8 hated for what I am than loved for what I am not. If I make a mistake at work and9 mousses...which was nice of him, I'm not complaining...but still, he made

10 that hard then! Me OMG, I have to go. I'm not going to talk about this with you.

11 negative. I am trying to tell you that - I am not dumb, I've tried this technique

12 You will never overcome this. Me I am not being negative. I am trying to

13 Yes, I agree with the doodling! And NO, I am NOT in kindergarten. I hate it when

14 I say I forgot something for 6 months, I am not lying or trying to sound

15 much relief, and you wonder why I am not the most pleasant person in the16 way street! * AD/HD does not mean I am not capable of being sucessful in

17 or keep your opinion to yourself. * I am not stupid or slow, please do not

18 didn't find a thread like this, so I hope I'm not re-hashing anything, or maybe if I

19 directions/meds. Honestly.. I'm not trying to annoy you! And I

20 during Jury Selection.... No your Honor, I am not 'under the influence' of illegal

21 simply to upset you or **** you off. If I am not paying proper attention to you,

times in my life. Yes, I forgot again. No, I'm not doing it in purpose. What? I'msometimes when that happens he says I'm not spontaneous enough!! Which

everything, but i t's nice to hear that I'm not crazy. Thanks for sharing.

and 17 minutes ago. Do realize that if I'm not paying attention to you, I'm still

what rubbish am i watching on the tele- I'M NOT WATCHING IT. I really enjoyed

friends in the world 6 Do be patient... I'm not always on the same planet 7 Do

life' etc 3 Don't treat me like an idiot... I'm not without intelligence 4 Don't t reat

hated for what I am than loved for what I am not. If I make a mistake at work andmousses...which was nice of him, I'm not complaining...but still, he made

that hard then! Me OMG, I have to go. I'm not going to talk about this with you.

negative. I am trying to tell you that - I am not dumb, I've tried this technique

You will never overcome this. Me I am not being negative. I am trying to

Yes, I agree with the doodling! And NO, I am NOT in kindergarten. I hate it when

I say I forgot something for 6 months, I am not lying or trying to sound

much relief, and you wonder why I am not the most pleasant person in theway street! * AD/HD does not mean I am not capable of being sucessful in

or keep your opinion to yourself. * I am not stupid or slow, please do not

didn't find a thread like this, so I hope I'm not re-hashing anything, or maybe if I

directions/meds. Honestly.. I'm not trying to annoy you! And I

during Jury Selection.... No your Honor, I am not 'under the influence' of illegal

simply to upset you or **** you off. If I am not paying proper attention to you,


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C l i 1


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Conclusions 1

Traits of a community of practice, but much largercommunity of users who seek for information withoutparticipating

Construction of collective identity ingroup vs outgroup

Experience-based establishing the reality of a symptom/problem providing narratives of personal solutions Nb: even in threads labelled as expert advice (legal) personal narratives prevail

No claims to definite status of such solutions weakensepistemology of illness

Self-reinforcing strategies Repetition Confirmation of hypotheses

C l i 2


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Conclusions 2

Very few threads truly controversial If threatening to community aims, contributions ostracised (trolls) If potentially constructive, progressive re-definition of issues

Corpus assisted analysis Highlights key lexicon Dominance of 1

person singular personal narrative Collocational patterns with I self-definitional issues Illness definition ASHD is often hedged contested status

knowledge creation and dissemination about contested illnesses in.ppt

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