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Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
Sxsw digital primitives presentation final
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Sxsw digital primitives presentation final

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  • 1. Digital Primitives Analyzing online healthcare communities of practice
  • 2. Stanford University Department of Linguistics doctoral graduation, 1998. 
  • 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
  • 4. “When other demographic factors are  held constant, having a chronic disease  significantly increases an internet user’s  likelihood to say they work on a blog or  ib li di icontribute to an online discussion, a  listserv, or other online group forum that  helps people with personal issues orhelps people with personal issues or  health problems.” Chronic Disease and the Internet Pew Internet & American Life Project, March 2010
  • 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
  • 9. Primitive means… • Non structured • Densely connected • Without institutional leadership or  support 9 Network of baseball steroid users http://www.orgnet.com/steroids.html
  • 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.”
  • 12. h lThree crucial components Domain • A shared domain provides common ground for discussion (Joint enterprise)  Community • Social relations build trust and facilitate learning (Mutual engagement) Practice • Community is constructed around shared knowledge of a profession (Shared repertoire)(Shared repertoire) 12
  • 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
  • 18. l lExplicit socialization This forum is NOT for Wannabes, Pretenders, Devotees or those people with a p p fetish for wheelchair users, as such members of society may be perceived as being  insensitive by those with a spinal cord injury. If you are identified as such, your  membership will be terminated without warning, and your posts removed. This site is not a dating site, if you repeatedly use the Chat Room and Personal  Messaging system for the purpose of online dating and solicitation of messaging  of a sexual nature, the administrator reserves the right to remove posts, and ban  offending members at their discretion without warning. Posts or Personal g g Messages requesting photographs or videos of an explicit nature will be regarded  as inappropriate and removed, after which the administration reserves the right to  terminate the offending members account. (original posted in bright red) From: http://www.apparelyzed.com [sic]
  • 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
  • 25. lText analytics • Computational linguists develop methods  via focus on sample problems (like movie  reviews), but to be really useful the  techniques have to be localized to a  specific task “Agile text mining” Streetlight principle—we do sentiment analysis because we can ( t f) Illustration: James Steinberg, taken from “The 'Streetlight Effect' on E‐Discovery”, http://www.law.com/jsp/pa/PubArticlePA.jsp?id=1355046344200&slreturn=20130204170021 (sort of)
  • 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 27
  • 28. db k l !Feedback welcome! http://sxsw.tv/cvf 28

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