3. All online communities share traits—but health‐All online communities share traits but health
focused communities are different
http://webspace.ship.edu/cgboer/maslow.html
5. Since the beginning, the internet (and usenet before)Since the beginning, the internet (and usenet before)
has enabled health focused communities
• Non‐co‐located forums allowed/fostered discussions of issues that were
– Rare (genetic disorders)
– Highly impactful (spinal cord injuries)
– Had few options (cancer)
– Were defined in some sense by a mystery (fibromyalgia)y y y ( y g )
6. h d f h l hWe have entered a new era of healthcare
More informationMore information
Greater self‐management
M di l i i f l i iMedical practice moving from relation transaction
7. What do we know and what can we learn aboutWhat do we know, and what can we learn, about
online health‐related communities?
[A] b f l ti di i li t I h f d it h d t id ki...[A]s a member of several active discussion lists, I have found it hard to avoid making
comparisons between those cybercommunities and other communities of which I am a
member. I have wondered, for example, if such communities act like face‐to‐face
communities in socializnig new members and whether (and, if so, how) language choices g ( f ) g g
made by long‐term members of the community work to accomplish this goal.
Professor Heidi Hamilton, 1998
Hamilton, HE. 1998. Reported speech and survivor identity in on‐line bone marrow transplantation
narratives. Journal of Sociolinguistics 111: 53‐67
8. " ” h d"Primitive” ≠ unsophisticated
http://flickr.com/photos/44577875@N08/4909683043
10. h h d h l k hNaming what they are and how we look at them
The study of… Communities
• Netnography
• Digital ethnography
• Virtual anthropology
• Usergroup
• Chatroom
• NewsgroupVirtual anthropology
• Cyber anthropology
Newsgroup
• Webring
• Online community
• Virtual community• Virtual community
• Disease‐specific patient network
A th i ti ?Are these emic or etic?
11. l h l h fOnline healthcare communities of practice
• Community of Practice originally posited by Jean Lave and Étienne Wenger to explain
situated learning (e.g., apprenticeships)
“Communities of practice are groups of people who p g p p p
share a concern or a passion for something they do
and learn how to do it better as they interact regularly.”
13. People who share a health issue don’t automaticallyPeople who share a health issue don t automatically
constitute a Community of Practice
• But... Online healthcare forums may host self‐organizing groups of participants
with the properties of a CoP:
• Domain: shared health issue
– Type 2 diabetes
Al h i ’ i– Alzheimer’s caregiver
– HEXA mutation carrier
• Community: sustained mutual interaction
– Users regular communicate view newsgroup, forum postings, chat, etc.Users regular communicate view newsgroup, forum postings, chat, etc.
– Establish and maintain relationships
• Practice: specialized knowledge and skills required to
– Manage symptoms,
– Evaluate treatment options,
– Navigate health care system,
– Get through the night
14. bDiabetesHUB, 1 Jan 2012 – 31 Mar 2012
• Activity
– 3,776 posts in 381 threads
– 406 distinct users
• No ‘average’ user
296– Top user wrote 296 posts
– 63 users posted at least 10 times
– 177 users (44%) only posted once
• Power lawsPower laws
– 80% of the posts are from 18% of the users
– Scale invariance
15. d h h h bFinding the communities within the DiabetesHUB
• Users construct links by posting in the
same thread
• Network of users forms a loosely
connected ‘small world’ network
• There are a few highly central users and
lots of peripheral ones
• Some overlapping areas of dense
connectionsconnections
16. d h h h bFinding the communities within the DiabetesHUB
• Graph clustering algorithms find
structure hidden in the network
• Users seem to organize themselves into
clusters with up to about 100 members
• Users in a cluster have many links with
each other, but are less likely to be
linked with users outside the cluster
• Heavier users may be members of more• Heavier users may be members of more
than one cluster, peripheral users may
not be a member of any
• But, are clusters communities of
practice?
Lancichinetti A, Radicchi F, Ramasco JJ, Fortunato S (2011) Finding Statistically Significant Communities in Networks.
PLoS ONE 6(4): e18961. doi:10.1371/journal.pone.0018961
17. ld h l hSome old‐school techniques
• All of the things that are studied closely by social and cultural anthropologists can be, by
extension, studied in these groups:
– Kinship terminology
– Explicit and implicit norms of interaction
– Joining rituals
– Specific “spaces” (taboo, ritual, private...)
– Named events (“coming of age”, “the talk”...)
By necessity, practices are modified to adjust to purely textual
nature of the relationships.p
19. l lImplicit socialization
The local, sequential function that a specific narrative fulfills may often be the q f p f f f y f
sharing of information or experience with other members of the community. If this
information is conveyed by means of a narrative complete with reported speech,
the language used may contribute significantly to the global function of helping to
socialize readers of that posting into a survivor identitysocialize readers of that posting into a survivor identity.
Heidi Hamilton, on the implicit and explicit functions of narrative in the
“S BMT” i“SupportBMT” community
20. d l “l l ” f b hJoining and explicit “levels” of membership
• Member Rankings
• Designation & Post Count
– Lurker 0‐4
– Newbie 5‐149
b 0 999– Member 150‐1999
– Advanced Member 2000‐4999
– Super Advanced 5000‐9999
– Super Geek 10000
http://www.apparelyzed.com/forums/forum‐51/announcement‐9‐read‐this‐first‐beginners‐guide‐to‐
using‐this‐forum/
21. d h d h hEncoding who you are and why you are here
• “Hello everyone, I'm new to the board. I'm not a diabetic as far as I know; e o e e yo e, e to t e boa d ot a d abet c as a as o ;
however, I have been checking my blood sugar recently because I tend to feel
bad after eating. Also, I've lost 7 pounds in the last year despite that fact that I'm
still a growing young adult. I've seen my fasting blood sugar 78‐98mg/dL (4.3‐
5.3mmol) I've been getting high 1‐hour readings postprandial. All readings 2‐
hours post prandial are below 120mg/dL, which I've read is okay. For example,
40 minutes after eating a bowl of soy milk and oats (275 calories) my blood
sugar read 177mg/dL... The 2‐hour postprandial was fine though. I've caught it
at 176 and 160 on other occasions too. Is it normal for my blood sugar to spike
that much? or should I get tested for A1c levels or get an oral glucose tolerance
test? I know this is a rather long post, so I thank you very much for your time
and effort!”
22. h “ h lk” l h 'Speech events— “The Talk” in Alzheimer's Disease
How do I enforce the no driving rule and the no guns rule?g g
Later this week, the doctor plans to tell my husband he can no longer drive. My
husband was an on‐the‐road salesman nearly all of his adult life. To him, driving is
second nature...or so he thinks. How am I going to enforce this?
Within 2 days, 42 responses
http://www.agingcare.com/Questions/enforce‐no‐driving‐and‐no‐guns‐rule‐156246.htm
23. Named milestones— “going out”
hey last night well it was through the day to about 8 or 9 but still i went out withhey, last night well it was through the day to about 8 or 9 but still i went out with
the lads to bars etc and for a meal for a little christmas get together, i didnt mind
to much about going for a meal as ive done that a few times but going in and out
of bars and clubs was a little weird, might not seem much but it was a step, theof bars and clubs was a little weird, might not seem much but it was a step, the
main one was everyone standing so close and so high also i needed to toilet and it
was at the back of this club so you had to pass the bar to get there but with it
being a club the bar was full from the bar to the wall and i couldnt just squeeze in g j q
and out of everyone so i caved and got my brother to help me get through but i
had to do it alone on the way back ‐ not so bad, pat on the back for me yay ‐ i
think, normally the though of going out would of put me off, getting ready etc
getting there and just the whole thing but i thought f**k it, its christmas time and
it was a good time i enjoyed myself and just thought i'd share hehe
http://www.apparelyzed.com/
24. d “ l ” h l ?How do we “scale” these analyses?
• Text analytics toolbox provides broadly applicable methods, not solutions to a specific
problem
– Purely etic, based entirely on linguistic form
• Sentiment analysis and opinion mining are solutions to a problem, not often
not the right problemnot the right problem
– Generically emic
26. Lessons
• What they are—professionalized learning organizations, focusing on specialized y p f g g f g p
forms of knowledge and experience
• What to call them—online healthcare communities of practice
• What can we learn from them how universal human health needs are being• What can we learn from them—how universal human health needs are being
met in an evolving healthcare delivery system
• How to analyze them—requires types of collaboration that are quite unusual
27. h d d h h f ?What do we do with this information?
• In a general way, we can observe the evolving role of peer‐to‐peer healthcare g y g p p
interaction as healthcare delivery evolves simultaneous to the massive increase
in healthcare knowledge and available information
• In a specific way, we can help craft or optimize solutions to problems—if we
build it, they may not come unless we understand what they really need
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28. db k l !Feedback welcome!
http://sxsw.tv/cvf
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