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  • DigitalPrimitives

    Analyzingonlinehealthcarecommunitiesofpractice

  • StanfordUniversityDepartmentofLinguisticsdoctoralgraduation,1998.

  • All online communities share traitsbut healthAllonlinecommunitiessharetraits buthealthfocusedcommunitiesaredifferent

    http://webspace.ship.edu/cgboer/maslow.html

  • Whenotherdemographicfactorsareheldconstant,havingachronicdiseasesignificantlyincreasesaninternetuserslikelihoodtosaytheyworkonablogor

    ib li di icontributetoanonlinediscussion,alistserv,orotheronlinegroupforumthathelps people with personal issues orhelpspeoplewithpersonalissuesorhealthproblems.

    ChronicDiseaseandtheInternetPewInternet&AmericanLifeProject,March2010

  • Since the beginning, the internet (and usenet before)Sincethebeginning,theinternet(andusenetbefore)hasenabledhealthfocusedcommunities

    Noncolocatedforumsallowed/fostereddiscussionsofissuesthatwere Rare(geneticdisorders) Highlyimpactful(spinalcordinjuries) Hadfewoptions(cancer) Weredefinedinsomesensebyamystery(fibromyalgia)y y y ( y g )

  • h d f h l hWehaveenteredaneweraofhealthcare

    More informationMoreinformation

    Greaterselfmanagement

    M di l i i f l i iMedicalpracticemovingfromrelation transaction

  • What do we know and what can we learn aboutWhatdoweknow,andwhatcanwelearn,aboutonlinehealthrelatedcommunities?

    [A] b f l ti di i li t I h f d it h d t id ki...[A]samemberofseveralactivediscussionlists,IhavefoundithardtoavoidmakingcomparisonsbetweenthosecybercommunitiesandothercommunitiesofwhichIamamember.Ihavewondered,forexample,ifsuchcommunitiesactlikefacetofacecommunitiesinsocializnignewmembersandwhether(and,ifso,how)languagechoicesg ( f ) g gmadebylongtermmembersofthecommunityworktoaccomplishthisgoal.

    ProfessorHeidiHamilton,1998

    Hamilton,HE.1998.Reportedspeechandsurvivoridentityinonlinebonemarrowtransplantationnarratives.JournalofSociolinguistics111:5367

  • " h d"Primitiveunsophisticated

    http://flickr.com/photos/44577875@N08/4909683043

  • Primitivemeans

    Nonstructured

    Denselyconnected

    Withoutinstitutionalleadershiporsupport

    9

    Networkofbaseballsteroidusershttp://www.orgnet.com/steroids.html

  • h h d h l k hNamingwhattheyareandhowwelookatthem

    Thestudyof Communities

    Netnography Digitalethnography Virtual anthropology

    Usergroup Chatroom NewsgroupVirtualanthropology

    CyberanthropologyNewsgroup

    Webring Onlinecommunity Virtual community Virtualcommunity Diseasespecificpatientnetwork

    A th i ti ?Are these emic or etic?

  • l h l h fOnlinehealthcarecommunitiesofpractice

    CommunityofPracticeoriginallypositedbyJeanLaveandtienneWengertoexplainsituatedlearning(e.g.,apprenticeships)

    Communitiesofpracticearegroupsofpeoplewhop g p p pshareaconcernorapassionforsomethingtheydo

    andlearnhowtodoitbetterastheyinteractregularly.

  • h lThreecrucialcomponents

    Domain

    Ashareddomainprovidescommongroundfordiscussion(Jointenterprise)

    Community

    Socialrelationsbuildtrustandfacilitatelearning(Mutualengagement)

    Practice

    Communityisconstructedaroundsharedknowledgeofaprofession(Shared repertoire)(Sharedrepertoire)

    12

  • People who share a health issue dont automaticallyPeoplewhoshareahealthissuedon tautomaticallyconstitute aCommunityofPractice

    But...OnlinehealthcareforumsmayhostselforganizinggroupsofparticipantswiththepropertiesofaCoP:

    Domain:sharedhealthissue Type2diabetes

    Al h i i Alzheimerscaregiver HEXAmutationcarrier

    Community:sustainedmutualinteraction Users regular communicate view newsgroup, forum postings, chat, etc.Usersregularcommunicateviewnewsgroup,forumpostings,chat,etc. Establishandmaintainrelationships

    Practice:specializedknowledgeandskillsrequiredto Managesymptoms, Evaluatetreatmentoptions, Navigatehealthcaresystem, Getthroughthenight

  • bDiabetesHUB,1Jan2012 31Mar2012

    Activity 3,776posts in381threads 406distinctusers

    No averageuser296 Topuserwrote296posts

    63userspostedatleast10times 177users(44%)onlypostedonce

    Power lawsPowerlaws 80%ofthepostsarefrom18%oftheusers Scaleinvariance

  • d h h h bFindingthecommunities withintheDiabetesHUB

    Usersconstructlinksbypostinginthesamethread

    Networkofusersformsalooselyconnectedsmallworldnetwork

    Thereareafewhighlycentralusersandlotsofperipheralones

    Someoverlappingareasofdenseconnectionsconnections

  • d h h h bFindingthecommunities withintheDiabetesHUB

    Graphclusteringalgorithmsfindstructurehiddeninthenetwork

    Usersseemtoorganizethemselvesintoclusterswithuptoabout100members

    Usersinaclusterhavemanylinkswitheachother,butarelesslikelytobelinkedwithusersoutsidethecluster

    Heavier users may be members of more Heavierusersmaybemembersofmorethanonecluster,peripheralusersmaynotbeamemberofany

    But,areclusterscommunitiesofpractice?

    LancichinettiA,RadicchiF,RamascoJJ,FortunatoS(2011)FindingStatisticallySignificantCommunitiesinNetworks.PLoSONE6(4):e18961.doi:10.1371/journal.pone.0018961

  • ld h l hSomeoldschooltechniques

    Allofthethingsthatarestudiedcloselybysocialandculturalanthropologistscanbe,byextension,studiedinthesegroups:

    Kinshipterminology Explicitandimplicitnormsofinteraction Joiningrituals Specificspaces (taboo,ritual,private...) Namedevents(comingofage,thetalk...)

    By necessity, practices are modified to adjust to purely textual nature of the relationships.p

  • l lExplicitsocialization

    ThisforumisNOTforWannabes,Pretenders,Devoteesorthosepeoplewithap pfetishforwheelchairusers,assuchmembersofsocietymaybeperceivedasbeinginsensitivebythosewithaspinalcordinjury.Ifyouareidentifiedassuch,yourmembershipwillbeterminatedwithoutwarning,andyourpostsremoved.

    Thissiteisnotadatingsite,ifyourepeatedlyusetheChatRoomandPersonalMessagingsystemforthepurposeofonlinedatingandsolicitationofmessagingofasexualnature,theadministratorreservestherighttoremoveposts,andbanoffendingmembersattheirdiscretionwithoutwarning.PostsorPersonalg gMessagesrequestingphotographsorvideosofanexplicitnaturewillberegardedasinappropriateandremoved,afterwhichtheadministrationreservestherighttoterminatetheoffendingmembersaccount.

    (originalpostedinbrightred)

    From:http://www.apparelyzed.com[sic]

  • l lImplicitsocialization

    Thelocal,sequentialfunctionthataspecificnarrativefulfillsmayoftenbetheq f p f f f y fsharingofinformationorexperiencewithothermembersofthecommunity.Ifthisinformationisconveyedbymeansofanarrativecompletewithreportedspeech,thelanguageusedmaycontributesignificantlytotheglobalfunctionofhelpingto

    socialize readers of that posting into a survivor identitysocializereadersofthatpostingintoasurvivoridentity.

    HeidiHamilton,ontheimplicitandexplicitfunctionsofnarrativeintheS BMT iSupportBMTcommunity

  • d l l l f b hJoiningandexplicitlevels ofmembership

    MemberRankings

    Designation&PostCount Lurker04 Newbie5149

    b 0 999 Member1501999 AdvancedMember20004999 SuperAdvanced50009999 SuperGeek10000

    http://www.apparelyzed.com/forums/forum51/announcement9readthisfirstbeginnersguidetousingthisforum/

  • d h d h hEncodingwhoyouareandwhyyouarehere

    Helloeveryone,I'mnewtotheboard.I'mnotadiabeticasfarasIknow;e o e e yo e, e to t e boa d ot a d abet c as a as o ;however,IhavebeencheckingmybloodsugarrecentlybecauseItendtofeelbadaftereating.Also,I'velost7poundsinthelastyeardespitethatfactthatI'mstillagrowingyoungadult.I'veseenmyfastingbloodsugar7898mg/dL(4.35.3mmol)I'vebeengettinghigh1hourreadingspostprandial.Allreadings2hourspostprandialarebelow120mg/dL,whichI'vereadisokay.Forexample,40minutesaftereatingabowlofsoymilkandoats(275calories)mybloodsugarread177mg/dL...The2hourpostprandialwasfinethough.I'vecaughtitat176and160onotheroccasionstoo.Isitnormalformybloodsugartospikethatmuch?orshouldIgettestedforA1clevelsorgetanoralglucosetolerancetest?Iknowthisisaratherlongpost,soIthankyouverymuchforyourtimeandeffort!

  • h h lk l h 'Speechevents TheTalk inAlzheimer'sDisease

    HowdoIenforcethenodrivingruleandthenogunsrule?g g

    Laterthisweek,thedoctorplanstotellmyhusbandhecannolongerdrive.Myhusbandwasanontheroadsalesmannearlyallofhisadultlife.Tohim,drivingissecondnature...orsohethinks.HowamIgoingtoenforcethis?

    Within2days,42responses

    http://www.agingcare.com/Questions/enforcenodrivingandnogunsrule156246.htm

  • Namedmilestones goingouthey last night well it was through the day to about 8 or 9 but still i went out withhey,lastnightwellitwasthroughthedaytoabout8or9butstilliwentoutwiththeladstobarsetcandforamealforalittlechristmasgettogether,ididntmindtomuchaboutgoingforamealasivedonethatafewtimesbutgoinginandoutof bars and clubs was a little weird, might not seem much but it was a step, theofbarsandclubswasalittleweird,mightnotseemmuchbutitwasastep,themainonewaseveryonestandingsocloseandsohighalsoineededtotoiletanditwasatthebackofthisclubsoyouhadtopassthebartogettherebutwithitbeingaclubthebarwasfullfromthebartothewallandicouldntjustsqueezeing j qandoutofeveryonesoicavedandgotmybrothertohelpmegetthroughbutihadtodoitaloneonthewayback notsobad,patonthebackformeyay ithink,normallythethoughofgoingoutwouldofputmeoff,gettingreadyetcgettingthereandjustthewholethingbutithoughtf**kit,itschristmastimeanditwasagoodtimeienjoyedmyselfandjustthoughti'dsharehehe

    http://www.apparelyzed.com/

  • d l h l ?Howdowescaletheseanalyses?

    Textanalyticstoolboxprovidesbroadlyapplicablemethods,notsolutionstoaspecificproblem

    Purelyetic,basedentirelyonlinguisticform

    Sentimentanalysisandopinionminingaresolutionstoaproblem,notoftennot the right problemnottherightproblem

    Genericallyemic

  • lTextanalytics

    Computationallinguistsdevelopmethodsviafocusonsampleproblems(likemoviereviews),buttobereallyusefulthetechniqueshavetobelocalizedtoaspecifictask

    Agiletextmining

    Streetlight principlewe do sentiment analysis because we can ( t f)

    Illustration:JamesSteinberg,takenfromThe'StreetlightEffect'onEDiscovery,http://www.law.com/jsp/pa/PubArticlePA.jsp?id=1355046344200&slreturn=20130204170021

    (sort of)

  • Lessons

    Whattheyareprofessionalizedlearningorganizations,focusingonspecializedy p f g g f g pformsofknowledgeandexperience

    Whattocallthemonlinehealthcarecommunitiesofpractice What can we learn from them how universal human health needs are being Whatcanwelearnfromthemhowuniversalhumanhealthneedsarebeingmetinanevolvinghealthcaredeliverysystem

    Howtoanalyzethemrequirestypesofcollaborationthatarequiteunusual

  • h d d h h f ?Whatdowedowiththisinformation?

    Inageneralway,wecanobservetheevolvingroleofpeertopeerhealthcareg y g p pinteractionashealthcaredeliveryevolvessimultaneoustothemassiveincreaseinhealthcareknowledgeandavailableinformation

    Inaspecificway,wecanhelpcraftoroptimizesolutionstoproblemsifwebuildit,theymaynotcomeunlessweunderstandwhattheyreallyneed

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  • db k l !Feedbackwelcome!

    http://sxsw.tv/cvf

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