Peertopeerhealthcare

Manypeopleespeciallythoselivingwithchronicor
rarediseasesuseonlineconnectionstosupplement
professionalmedicaladvice

SusannahFox,AssociateDirector
February28,2011

http://pewinternet.org/Reports/2011/P2PHealthcare.aspx

PewResearchCentersInternet&AmericanLifeProject
1615LSt.,NWSuite700
Washington,D.C.20036
2024194500|pewinternet.org
http://pewinternet.org Page2
SummaryofFindings
Theinternetgivespatientsandcaregiversaccessnotonlyto
information,butalsotoeachother.
ManyAmericansturntofriendsandfamilyforsupportandadvicewhentheyhaveahealthproblem.
Thisreportshowshowpeoplesnetworksareexpandingtoincludeonlinepeers,particularlyinthe
crucibleofraredisease.Healthprofessionalsremainthecentralsourceofinformationformost
Americans,butpeertopeerhealthcareisasignificantsupplement.
Thisreportisbasedinpartonanationaltelephonesurveyof3,001adultswhichcapturesanestimateof
howwidespreadthisactivityisintheU.S.Allnumericaldataincludedinthereportisbasedonthe
telephonesurvey.Theotherpartoftheanalysisisbasedonanonlinesurveyof2,156membersofthe
NationalOrganizationforRareDisorders(NORD)whowroteshortessaysabouttheiruseoftheinternet
incaringforthemselvesorfortheirlovedones.
Oneinfiveinternetusershavegoneonlinetofindotherslikethem.
Eighteenpercentofinternetuserssaytheyhavegoneonlinetofindotherswhomighthavehealth
concernssimilartotheirs.
Themoststrikingfindingofthenationalsurveyistheextentofpeertopeerhelpamongpeopleliving
withchronicconditions.Oneinfourinternetuserslivingwithhighbloodpressure,diabetes,heart
conditions,lungconditions,cancer,orsomeotherchronicailment(23%)saytheyhavegoneonlineto
findotherswithsimilarhealthconcerns.Bycontrast,15%ofinternetuserswhoreportnochronic
conditionshavesoughtsuchhelponline.
Othergroupswhoarelikelytolookonlineforpeoplewhosharetheirsamehealthconcernsinclude:
internetuserswhoarecaringforalovedone;internetuserswhoexperiencedamedicalcrisisinthepast
year;andinternetuserswhohaveexperiencedasignificantchangeintheirphysicalhealth,suchas
weightlossorgain,pregnancy,orquittingsmoking.
Someofthemostnotableinteractionsinvolvepeoplewhomeetonlineforthefirsttime.Therewere
numerousexamplesofthesepowerfullongdistanceconnectionsinouronlinesurveyofpatientsand
caregiverswhotakepartinrarediseasecommunities.Oneadultlivingwitharareconditiondescribed
howsheconnectedwithanotherpatientonline,bonded,andthenenrichedthefriendshipwithin
personencounters:ThefirsttimeImetanotherpatient,facetoface,Isobbed.Iwasoverjoyedand
begantocommunicatewiththemonaregularbasisandmynetworkgrew.

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Inthemomentofneed,mostpeopleturntoahealthprofessionalfor
information,care,orsupport.
Whenaskedaboutthelasttimetheyhadahealthissue,71%ofadultsintheU.S.saytheyreceived
information,care,orsupportfromahealthprofessional.Fiftyfivepercentofadultssaytheyturnedto
friendsandfamily.Twentyonepercentofadultssaytheyturnedtootherswhohavethesamehealth
condition.
Themajorityofhealthcareconversationshappenoffline:Just5%ofadultssaytheyreceivedonline
information,care,orsupportfromahealthprofessional,13%saytheyhadonlinecontactwithfriends
andfamily,and5%saytheyinteractedonlinewithfellowpatients.
Inouronlinesurvey,patientsandcaregiverswereaskedthesamequestionaboutthelasttimetheyhad
ahealthissue.Thepeoplelivingwithrarediseasewhorespondedtothesurveyfaroutpacedallother
groups,includingthoselivingwithchronicconditions,intappingthewisdomoftheirpeernetwork.
Morethanhalfofrarediseaserespondentssaytheyturnedtofamilyandfriends.Anothermajoritysay
theyturnedtootherswhohavethesamehealthcondition.
Amotherofasmallchildwitharareconditionwroteaboutthelifelineshehasfoundonline:Whena
diseaseissorareandtherearenofolksinyourtown,andfewinyourstatewhoaregoingthroughwhat
youaregoingthrough,youneedasupportgroupthatencompassespeoplefromallovertheworld.
Gettingtoknowpeoplethroughthedisorderhasbeenanamazingexperienceandhascreated
incrediblywonderfulfriendshipsandties.
Peopleturntodifferentsourcesfordifferentkindsofinformation.
Inthenationalsurvey,adultswereaskedwhichgroupismorehelpfulwhentheyneedcertaintypesof
informationorsupport:healthprofessionalslikedoctorsandnursesorpeerslikefellowpatients,
friends,andfamily.Thepatternoftheirresponseswasprettyclear:Whentheissueinvolvedtechnical
issuesrelatedtoahealthissue,professionalsheldsway.Whentheissueinvolvedmorepersonalissues
ofhowtocopewithahealthissueorgetquickrelief,thennonprofessionalswerepreferredbymost
patients.

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Whoismorehelpfulwhenyou
need
Professional
sourceslike
doctorsand
nurses
Fellow
patients,
friends,and
family
Both
equally
Timeswhenprofessionalsmattermost
Anaccuratemedicaldiagnosis 91% 5% 2%
Informationaboutprescription
drugs
85 9 3
Informationaboutalternative
treatments
63 24 5
Arecommendationforadoctor
orspecialist
62 27 6
Arecommendationfora
hospitalorothermedicalfacility
62 27 6
Timeswhennonprofessionalsmattermost
Emotionalsupportindealing
withahealthissue
30 59 5
Aquickremedyforaneveryday
healthissue
41 51 4
Timeswhenthetwogroupsareequallyhelpful
Practicaladviceforcopingwith
daytodayhealthsituations
43 46 6
Source:PewResearchCentersInternet&AmericanLifeProject,August9
September13,2010Survey.N=3001adultsandthemarginoferroris+/3
percentagepointsforthefullsample.

Manypeoplefindtheinternettobeavaluabletool,whethertheyareusingittosearchforaquick
answerorgainadeeperunderstandingofanewtreatmentoptionorprescription.Asonerespondentin
theonlinesurveycommented,'Whentimeisoftheessence,searchontheinternetistheonlywayto
timetravel.Theinternetisalso,asthisstudyshows,awaytotapintoourinstinctstogathertogether,
helpotherpeople,andbehelpedourselves.

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Acknowledgements
ThisreportistheresultofcollaborationbetweenthePewInternetProjectand
theCaliforniaHealthCareFoundation.
ThePewInternet&AmericanLifeProjectisaninitiativeofthePewResearchCenter,anonprofitfact
tankthatprovidesinformationontheissues,attitudesandtrendsshapingAmericaandtheworld.The
Projectisnonpartisanandtakesnopositiononpolicyissues.SupportisprovidedbyThePewCharitable
Trusts.
TheCaliforniaHealthCareFoundationisanindependentphilanthropycommittedtoimprovingtheway
healthcareisdeliveredandfinancedinCalifornia.
Allquantitative,numericaldataisbasedonaSeptember2010national
telephonesurveyconductedbyPrincetonSurveyResearchAssociates
International(PSRAI).
PSRAIisanindependentfirmdedicatedtohighqualityresearchprovidingreliable,validresultsfor
clientsintheUnitedStatesandaroundtheworld.
Allqualitativedata,includingthestoriesandinsightsprovidedbycaregiversand
patients,isbasedonanonlinesurveyofmembersoftheNationalOrganization
ofRareDisorders(NORD)inDecember2010.
NORDisanonprofitorganizationdedicatedtoimprovingthelivesofallpatientsandfamiliesaffected
byrarediseasesthroughadvocacy,education,research,andpatientservices.NORDsentinvitationstoa
sampleoftheirmembershipwhichresultedin2,156completedonlineresponsesto14questionsabout
howtheynavigatetheshoalsoflivingwithrareconditions.
Iamdeeplygratefultotherespondentsofboththetelephonesurveyandtheonlinesurvey,allofwhom
contributedtomyunderstandingoftheroleoftheinternetinthenewhealthcarelandscape.Thisisthe
firstofaseriesofanalysesplannedforthesecombineddatasets.

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MainReport
PeertoPeerHealth
Theinternetprovidesaccessnotonlytoinformation,butalsotoeachother.
ThePewInternetProjectandCaliforniaHealthCareFoundationhavelongbeeninterestedintheimpact
oftheinternetonhealthandhealthcare,measuringhowmanypeoplehaveaccesstotechnology,how
theyuseittogatherinformation,andwhattopicsareofgreatestinterest.
1
Aprimaryfindingofour
researchisthathealthprofessionalscontinuetoplayacentralroleinmostpeoplesliveswhenitcomes
tobeingsick,gettingwell,andmaintaininggoodhealth,nomatterthelevelofinternetaccesssomeone
mayhave.
2

However,theinternethasnotonlyfacilitatedincreasedpatientsaccesstoinformation,butithasalso
enablednewpathwaysforpatientstofindandhelpeachother.Socialnetworksites,blogs,online
communities,emailgroupsandlistservs,andothertoolsallowpeopletoexpressthemselvesinways
thatrespondimmediatelytopeople.Butthosemessagesalsopersistandareoftensearchableandcan
helppatientsinthefuture.Peopleusetheinternettofindotherswhosharethesameinterests,
whetherinpolitics,hobbies,music,health,oranyothertopic,nomatterwheretheymaylive.Social
toolsalsodeepenpeoplesconnectionstogroupstheyjoinofflineanddrawthemtojoinnewgroups
formedonline.Indeed,46%ofinternetuserswhoareactiveingroupssaytheinternethashelpedthem
tobeactiveinmoregroupsthanwouldotherwisebethecase.
3

Overthelastfewyears,thepopularimaginationhasbeencapturedbythepossibilitythatpeoplecan
usedigitaltoolstoreorganizesegmentsofsociety.
4
Arevolutioninhealthcareisrunningalonga
paralleltrack,mixingpeoplesinstinctstoshareknowledgewiththesocialmediathatmakeiteasy,
creatingwhatmightbecalledpeertopeerhealthcare.
Takingthesociallifeofhealthinformationtothenextlevel.
Thisreportisbasedinpartonanationaltelephonesurveyof3,001adultswhichcapturesanestimateof
howwidespreadthisactivityisintheU.S.Allnumericaldataincludedinthereportisbasedonthe
telephonesurvey.Theotherpartoftheanalysisisbasedonanonlinesurveyof2,156membersofthe

1
HealthTopics,bySusannahFox.(PewInternetProjectandCaliforniaHealthCareFoundation:February1,2011).
Availableat:http://www.pewinternet.org/Reports/2011/HealthTopics.aspx
2
TheSocialLifeofHealthInformation,bySusannahFoxandSidneyJones.(PewInternetProjectandCalifornia
HealthCareFoundation:June11,2009).Availableat:http://www.pewinternet.org/Reports/2009/8TheSocialLife
ofHealthInformation.aspx
3
TheSocialSideoftheInternet,byLeeRainie,KristenPurcell,andAaronSmith.(PewInternetProject:January
18,2011).Availableat:http://www.pewinternet.org/Reports/2011/TheSocialSideoftheInternet.aspx
4
ThePoliticalPowerofSocialMedia,byClayShirky.(ForeignAffairs:January/February2011).Availableat:
http://www.foreignaffairs.com/articles/67038/clayshirky/thepoliticalpowerofsocialmedia
http://pewinternet.org Page7
NationalOrganizationforRareDisorders(NORD)whowroteshortessaysabouttheiruseoftheinternet
incaringforthemselvesorfortheirlovedones.
NORDrepresentstheapproximately25millionAmericanslivingwithararedisease,whichisdefinedas
affectingfewerthan200,000peopleintheU.S.Thepeoplewhoparticipatedintheonlinesurvey
reportedawidearrayofconditions,suchasMarfansSyndrome,congenitalhyperinsulinism,and
aplasticanemia,tonamejustafew.Inreadingthoseessays,itbecomesclearthatthepeoplewho
respondedtothesurveyhavetakenthesociallifeofhealthinformationtothenextlevel.Manyofthem
forgedalongpathtowardadiagnosis(iftheyevenhaveone)onlytofindoutthatthiswassimplythe
startofanotherjourney.
Peoplelivingwithraredisease,theirownoralovedones,havehonedtheirsearching,learning,and
sharingskillstoafinepoint.Theyendlesslyscanresourcesforcluestotrytocopewithandmitigatethe
inevitablecomplicationsandsetbacksthatcomefromrarediseases.Whatwasonceasolitary
expeditionforonepersonoronefamily,however,hasbecomeacollectivepursuittakenonbybandsof
brothersandsistersinarmswhomaynevermeetupinperson.
ManyAmericansturntofriendsandfamilyforsupportandadvicewhentheyhaveahealthproblem.
Thisreportshowshowpeoplesnetworksareexpandingtoincludeonlinepeers,particularlyinthe
crucibleofraredisease.
Wecansaythingstoeachotherwecan'tsaytoothers.
Oneinfiveinternetusers(18%)havegoneonlinetofindotherswhomighthavehealthconcernssimilar
totheirs.
Internetusersages65andolderarelesslikelythanyoungerinternetuserstohavedonethis(10%,
comparedwith18%ofthoseages5064,forexample).Spanishdominantinternetusersarealso
significantlylesslikelythanEnglishdominantinternetuserstohavelookedonlineforsomeonewith
similarhealthconcerns(6%,comparedwith19%).
Twentythreepercentofinternetuserslivingwithchronicconditionshavelookedonlineforsomeone
withsimilarhealthconcerns,comparedwith15%ofthosewhoreportnoconditions.Inthesurvey,we
askedaboutchronicconditionsintwoways:First,weaskedpeopleiftheyhadoneoffiveconditions:
highbloodpressure,diabetes,lungconditions,heartconditions,orcancer.Alloftheinternetuserswho
hadatleastoneofthoseconditionsareequallylikelytohavelookedonlineforsomeonewithsimilar
healthconcerns.
Oursecondstrategyinlookingatchronicdiseasewastoaskpeopleiftheyhadanyothercondition
besidestheonewementioned.Some17%ofrespondentssaytheydo.Itisintriguingthatagreater
proportionoftheseinternetuserslivingwithlesscommon,chronichealthproblemshavegoneonlineto
findotherswithsimilarhealthconcerns.Thirtytwopercentofinternetusersinthatgroupsaytheyhave
doneso,comparedwith15%ofinternetuserswhohavenochronicconditions.
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Lookingonlineforsomeonelikeyou:Healthstatus

Percentageofinternetusersin
eachgroupwhohavelooked
onlineforotherswithsimilar
healthconcerns
Allinternetusers 18%
Caregiverstatus
Currentlycaringforalovedone 26
Notacaregiver 15
Recentmedicalcrisis
Experiencedwithinpastyear
selforsomeoneclose
23
Norecentexperience 16
Recentpersonalhealthchange
Experiencedwithinpastyear 24
Norecentexperience 17
Chronicdiseasestatus
Oneormorechronicconditions 23
Noconditions 15
Disabilitystatus
Oneormoredisabilities(N=439) 20
Nodisabilities 18
Source:PewResearchCentersInternet&AmericanLifeProject,August9
September13,2010Survey.N=2065internetusersage18+.Marginoferroris
+/3percentagepointsforthefullsample.Marginsoferrorforsub
populationsarehigher.

Internetuserswhohaveexperiencedarecentmedicalemergency,theirownorsomeoneelses,arealso
morelikelythanotherinternetuserstogoonlinetotrytofindsomeonewhosharestheirsituation:
23%,comparedwith16%.Thisfitsthepatternobservedinotherresearchthatpeoplegoingthrougha
medicalcrisisarevoraciousinformationconsumers:85%saytheylookonlineforhealthinformation,
comparedwith77%ofinternetuserswhohavenothadthatexperienceinthepastyear.
5

Internetuserswhohaveexperiencedasignificantchangeintheirphysicalhealth,suchasweightlossor
gain,pregnancy,orquittingsmokingarealsomorelikelythanotherinternetuserstohavelookedonline
forsomeonelikethem.Thisisnotnewbehavior,ofcourse,asanymemberofWeightWatchersora
newmothersplaygroupcanattest.However,theinternetwidensthenetworkavailabletopeopleand
allowsbehaviorchangetospreadinnewways.Exsmokerscansupporteachotherthroughnicotine

5
HealthTopics(2011).
http://pewinternet.org Page9
cravingsatanytimeofthedayornight,forexample,andstudieshaveshownthatthemorehelp
someonereceives,themorelikelytheywillhelpsomeoneelse.
6

Rarediseaseseemstoamplifythisneedtospreadonesnetworkfarandwide.Andthismoreextended
networksometimescanbringspecialbenefits.Patientssaytheywillconfidetoothersintheseextended
networksinwaysthataresometimeshardtoconfidetotheirclosestfamilymembersandfriends.A
womanlivingwithablooddisorderwroteintheonlinesurveyabouthersupportgroup:Wecansay
thingstoeachotherwecan'tsaytoothers.Wejokeaboutdoctorsanddeath.Wecrywhenweneedto.
Togetherwearebetterinformed.Thesupportispowerfulandempowering.
Inabookaboutrarediseasecaregivers,UncommonChallenges;SharedJourneys,onemotherwrote,
Beforetheinternet,wewerealone.In1996,whenJacobwasborn,therewasnosearchenginetooffer
meanyinformation.Today,becauseofsocialmedia,weareconnectedwithmanypeoplewhoare
fightingthesamefightasweare.Theinternethasmadeoursmalldiseaselargerandweareableto
educatemanymorepeoplenow.
7

Ournationalphonesurveyfoundthat26%ofinternetuserscaringforalovedonesaytheyhavelooked
onlineforsomeonewithsimilarhealthconcerns,comparedwith15%ofinternetuserswhoarenot
currentlycaringforalovedone,eitheranadultorachild.
8
Inouronlinesurvey,awomanwhoisthe
primarycaregiverforherhusbandexplainedthatsheusedthisstrategytotrytogainaccesstofacts,
insights,andadvicethatsometimesdidntcomefromdoctorsorherimmediatecircleofcontacts.Since
shehadpreviouslyfoundgoodinformationaboutbreastcanceronline,sheexpectedtofindsimilar
resourcesabouthisdisease,eventhoughitisamuchlesscommonconditionthanbreastcancer.She
wrote,'IwaslookingforthesamesupportthatIfoundonBreastcancer.Orgfor[hiscondition].Itisa
moredifficultreachforinformationandcontactwithotherindividualsdealingwiththedisease.Ihope
toseeitimprove.
Theinternetcanenableconnectionsacrossdistancesandamongpeoplewhomayneverhavemetin
person.Theseencounterscanhavedeepandlastingimpactonpeopleshealthandwellbeing,
particularlyamongthosewhothoughttheywouldneverfindsomeonewhosharedtheirparticular
situation.Forexample,anadultlivingwitharareconditionwrote,ThefirsttimeImetanotherpatient,
facetoface,Isobbed.Iwasoverjoyedandbegantocommunicatewiththemonaregularbasisandmy
networkgrew.

6
BuildingaResearchAgendaforParticipatoryMedicine,bySusannahFox(epatients.net:October11,2010).
Availableat:http://epatients.net/archives/2010/10/buildingaresearchagendaforparticipatorymedicine.html
Seealso:Connected:TheSurprisingPowerofOurSocialNetworksandHowTheyShapeOurLives,byNicholas
ChristakisandJamesFowler(2009).
7
AFightingChance,byJordanaHolovach,inUncommonChallenges;SharedJourneys.(SirenInteractive:2011).
See:http://press.sireninteractive.com/
8
Thewordcaregiversisusedthroughoutthisreporttorefertopeoplewho,inthepast12months,have
providedunpaidcaretoaparent,child,friend,orotherlovedone.Unpaidcareforanadultmayincludehelpwith
personalneedsorhouseholdchores,managingfinances,arrangingforoutsideservices,orvisitingregularlytosee
howtheyaredoing.Unpaidcaretoachildincludescareforanongoingorseriousshorttermcondition,emotional
orbehavioralproblems,ordevelopmentalproblems.
http://pewinternet.org Page10
IntheMomentofNeed
Healthprofessionals,friends,familymembers,andfellowpatientsareallpartof
themix.
Whenaskedaboutthelasttimetheyhadahealthissue,71%ofadultsintheU.S.saytheyreceived
information,care,orsupportfromahealthprofessional.Fiftyfivepercentofadultssaytheyturnedto
friendsandfamily.Twentyonepercentofadultssaytheyturnedtootherswhohavethesamehealth
condition.
Themajorityoftheseinteractionshappenoffline:just5%ofadultssaytheyreceivedonlineinformation,
care,orsupportfromahealthprofessional,13%saytheyhadonlinecontactwithfriendsandfamily,
and5%saytheyinteractedonlinewithfellowpatients.
Thelasttimeyouhadahealthissue,did
yougetinformation,care,orsupport
from
Yes,
online
Yes,
offline
Yes,
both
Nota
source
Adoctororotherhealthcare
professional
1% 66% 4% 29%
Friendsandfamily 1 42 12 44
Otherswhohavethesamehealth
condition
1 16 4 77
Source:PewResearchCentersInternet&AmericanLifeProject,August9
September13,2010Survey.N=3001adultsandthemarginoferroris+/3
percentagepointsforthefullsample.Marginsoferrorforsubpopulationsare
higher.

Peoplelivingwithchronicconditionsaremorelikelythanthosewhoreportnoconditionstosaythey
turnedtoahealthprofessional:79%,comparedwith63%.Bothgroupsareequallylikelytosaythey
receivedinformation,care,orsupportfromfriendsandfamily.Oneinfourpeoplelivingwithchronic
conditions(25%)saytheygotinformation,care,orsupportfromotherpeoplewhohavethesame
healthconditionthelasttimetheyhadahealthissue,comparedwith19%ofadultswhoreportno
chronicconditions.Again,adultswhoreportthattheyhaveaconditionotherthanthefivenamedinthe
surveyarethemostlikelygrouptoturntofellowpatientsforcounsel.Fullyonethirdofthisgroup
(31%)hasdoneso.Inallcases,mostofthecommunicationhappensoffline.
Rareconditionsnecessitateonlineconsultationwithpeers.
AsignificantlimitationoftheonlinesurveyweconductedwithNORDisitsrelianceonasampleof
peoplewhohavealreadyfoundacommunityofthosewhosharetheircondition.Sinceitisnota
representativesampleofpeoplelivingwithraredisease,theresponsescannotbedirectlycomparedto
http://pewinternet.org Page11
thenationaltelephonesurveyresults.However,itisinterestingtolookatthepatternsinthedata,and
inthiscase,thepatternsarestrikinglydifferentfromtheresultswegotinthetelephonesurvey.
Whenaskedthesamequestionaboutthelasttimetheyhadahealthissue,thepeoplelivingwithrare
diseasewhorespondedtothesurveyfaroutpacedallothergroups,includingthoselivingwithchronic
conditions,intappingthewisdomoftheirpeernetwork.Morethanhalfofrarediseaserespondentssay
theyturnedtofamilyandfriends.Anothermajoritysaytheyturnedtootherswhohavethesamehealth
condition.Muchoftheirinteractionwithfriends,family,andfellowpatientsorcaregivershappens
onlinebynecessity,sincetheyareunlikelytoliveneartothepeoplewhosharetheirconditions.
Yetagain,itiscriticaltonotethathealthprofessionalswerethemostpopularchoiceevenamongthis
highlynetworkedgroupofpeoplelivingwithrareconditions.Theoftexpressedfearthatpatientsare
usingtheinternettoselfdiagnoseandselfmedicatewithoutreferencetomedicalprofessionalsdoes
notemergeinnationalphonesurveysorinthisspecialrarediseasecommunitysurvey.Advicefrom
peersisasupplementtowhatadoctorornursemayhavetosayaboutahealthsituationthatarises.
Awomanwhocaresforherhusbanddescribeshowshereliesonbothgroupstonavigatetothe
informationsheneeds:Wehavefoundthatwegethelpfulinfofrombothdoctorsandother
patients/caregivers.Otherpatients/caregiversarealmostmorehelpfulwhenitcomestothisdisease
becauseasagrouptheyhavemoreinfothananyoneindividualdoctorhas.Wehavegotteninfofrom
otherpatients/caregiversthatwe'vethentoldtheoncologistaboutsohecouldlookintoit.Sometimes
wefeellikewe'reeducatingourdoctormorethanheiseducatingus.
Onemotherofanowadultchildwitharareconditionwroteabouthowmuchshevaluestheadvocacy
groupfoundedbyagroupofpatients.Shewrites,Expertswhohavesuperiorinformationthanthebest
hepatologistsaretheretoanswerourquestions.Patientsandcaregiversarethereforeachotherandno
questionremainsunanswered.Iwishwehadhadthisgroupof2,000withusatthebeginning.
Amotherofasmallchildwitharareconditionwritesaboutthelifelineshehasfoundonline:Whena
diseaseissorareandtherearenofolksinyourtown,andfewinyourstatewhoaregoingthroughwhat
youaregoingthrough,youneedasupportgroupthatencompassespeoplefromallovertheworld.
Gettingtoknowpeoplethroughthedisorderhasbeenanamazingexperienceandhascreated
incrediblywonderfulfriendshipsandties.
Healthprofessionalsretaintheirroleasexpertsinacertainfieldorcondition,butinthesedisease
communities,eachpersonisanexpertinobservingtheeffectsofadiseaseoratreatmentontheirown
oralovedonesbodyormind.Inthisway,rarediseasepatientsandcaregiverswhogathertogether
onlineareanexampleofasmartgroup,theelementsofwhichJamesSurowieckidescribedinhis
book,TheWisdomofCrowds:Theyarediverseanddecentralized,yetabletopoolknowledgeand
summarizetheirobservations,nomatterhoweccentricorindividualtheymaybe.
9

9
TheWisdomofCrowds,byJamesSurowiecki.(RandomHouse:2004).See:
http://www.randomhouse.com/features/wisdomofcrowds/index.html
http://pewinternet.org Page12
Ourfindingsalsoechowhathasbeenfoundinotherresearch.A2007studyoftheAssociationofCancer
OnlineResourcesfoundthatinformationexchange,notsimplyemotionalsupport,wastheprimary
driverforcommunitymembers.Indeed,themostcommonexpressionsofsupportwereoffersof
technicalinformationandexplicitadviceabouthowtocommunicatewithhealthcareproviders.
10

PatientsLikeMe,anonlinequantitativepersonalresearchplatformforpatients,haspublishedseveral
studiesnotingthebenefitsgainedbypeoplewhosharepersonalhealthdataandtipsabouttheir
conditions.
11
Inone2010study,patientsreportedmakingmoreinformedtreatmentdecisionsasa
resultofusingthesite,particularlyaroundmanagingsideeffects.
12
CureTogetherisanotherexample
ofusingpatientcontributeddatatocrowdsourceanswerstohealthquestionsonawiderangeof
topics.
13

10
HowCancerSurvivorsProvideSupportonCancerRelatedInternetMailingLists,byAndreaMeier,PhD;
ElizabethJLyons,MPH;GillesFrydman;MichaelForlenza,MPH,PhD;BarbaraKRimer,DrPH.(JournalofMedical
InternetResearch:Vol.9,No.2).Availableat:http://www.jmir.org/2007/2/e12/
11
Seehttp://www.patientslikeme.com/research
12
SharingHealthDataforBetterOutcomesonPatientsLikeMe,byPaulWicks,PhD;MichaelMassagli,PhD;Jeana
Frost,PhD;CatherineBrownstein,PhD;SallyOkun,RN;TimothyVaughan,PhD;RichardBradley,RN;James
Heywood,SB.(JournalofMedicalInternetResearch:Vol.12,No.2).Availableat:
http://www.jmir.org/2010/2/e19/
13
CureTogetherCrowdsourcedPatientExperience,byAlexandraCarmichael.(AshokaChangemakers:August
24,2010).Availableat:http://www.changemakers.com/node/88624
http://pewinternet.org Page13
DifferentSourcesforDifferentKindsofInformation
Professionalsorpeers?Both.
InMarch1999,TomFerguson,amedicaldoctorandselfcareadvocate,andBillKelly,cofounderof
SapientHealthNetwork,fieldedasurveyofanonlinepatientcommunitywhichaskedmemberstorate
themostusefulresourcefortwelvedimensionsofmedicalcare.
14
Onlinepatientgroupswererated
moreusefulthanhealthprofessionalsontenofthetwelveaspectsofcare,suchaspracticalknowledge
andhelpfindingotherresources,whereasspecialistsandprimarycaredoctorsreceivedhigherratings
fordiagnosisandmanagingacondition.
Itwasasmallsampleofasinglepatientgroup(just191respondents),butitservedastheinspirationfor
thefollowingseriesofquestions.Inournationaltelephonesurvey,alladultswereaskedwhichgroupis
morehelpfulwhentheyneedcertaintypesofinformationorsupport:healthprofessionalslikedoctors
andnursesorpeerslikefellowpatients,friends,andfamily.
Whoismorehelpfulwhenyou
need
Professional
sourceslike
doctorsand
nurses
Fellow
patients,
friends,and
family
Both
equally
Timeswhenprofessionalsmattermost
Anaccuratemedicaldiagnosis 91% 5% 2%
Informationaboutprescription
drugs
85 9 3
Informationaboutalternative
treatments
63 24 5
Arecommendationforadoctor
orspecialist
62 27 6
Arecommendationfora
hospitalorothermedicalfacility
62 27 6
Timeswhennonprofessionalsmattermost
Emotionalsupportindealing
withahealthissue
30 59 5
Aquickremedyforaneveryday
healthissue
41 51 4
Timeswhenthetwogroupsareequallyhelpful
Practicaladviceforcopingwith
daytodayhealthsituations
43 46 6
Source:PewResearchCentersInternet&AmericanLifeProject,August9
September13,2010Survey.N=3001adultsandthemarginoferroris+/3
percentagepointsforthefullsample.

14
EPatientsPrefereGroupstoDoctorsfor10of12AspectsofHealthCarebyTomFerguson,MD(TheFerguson
Report:March1999).Availableat:http://www.fergusonreport.com/articles/fr039905.htm
http://pewinternet.org Page14

Accuratemedicaldiagnosis
Healthprofessionalsaretheoverhwhelmingfavoriteswhenitcomestogettinganaccuratemedical
diagnosis.Fully91%ofU.S.adultssaydoctorsandnursesaremorehelpfulthanothersources,suchas
fellowpatients,friends,andfamily,whentheyneedadiagnosis.Just5%ofadultssaytheyfindadvice
fromfriends,family,andothersourcesmorehelpful.
Peoplelivingwithrareconditionsoftenstruggletogetadiagnosis.Infact,theNationalInstitutesof
HealthestablishedtheUndiagnosedDiseasesPrograminordertohelppatientswithrareconditionsfind
answers,withtheunderstandingthattheexplorationoftheedgesofmedicinecanprovideinsightsinto
morecommonailments.
15
Adiagnosis,however,isjustanotherstartingpointformostpeople,
especiallyiftheyfeelmoreinformationandadviceareneeded.
OnewomaninouronlinesurveyofNORDmembersdescribedhowherdoctorgaveherthreepages
copiedfromamedicaljournalaboutherconditionandlittleelse.Shewenthomeandfoundanonline
supportgroupwhereshelearnedaboutthetestsshewouldsoonfaceaspartofthenextstageof
diagnosis.Unfortunately,sinceshewasthefirstpersonwiththisconditiontoeverbetreatedather
localhospital,shesaysshedidnotreceiveoptimalcare.Shewrote:ThebestpieceofinformationthatI
learnedfromotherpatientswastogettoaphysicianthattrulyknowshowtotreatmydisease.Ipass
thisalongtoalloftheotherpatientsthatIcomeincontactwith.Idon'twantanyoneelsetoreceivethe
wrongdosageasIdid.Otherpatientsareyourbestsourceofinformationwhendealingwitharare
disease.Theyarelivingitandknowexactlyhowyoufeel.
Informationaboutprescriptiondrugs
Healthprofessionalsaretheclearfavoritewhenitcomestogatheringinformationaboutprescription
drugs.Fully85%ofadultssaytheythinkdoctorsandnursesaremorehelpfulthanpeersourceswhen
theyneeddrugrecommendations.
ArecentstudybythePewInternetProjectandtheCaliforniaHealthCareFoundationreportedthat24%
ofinternetuserslookonlineforinformationaboutdrugsafetyorrecalls.
16
Caregivers,women,college
graduates,andinternetuserslivingwithchronicconditions(particularlythosewithlungconditions)lead
allothergroupsintheirinterestindrugsafetyinformation.Ageisalsoasignificantpredictor:29%of
GenerationXinternetusers(3445)saytheyhavedonethistypeofresearchonline,comparedwith21%
ofinternetusersages4655yearsold.

15
MedicalDetectivesFindTheirFirstNewDisease,byGinaKolata(TheNewYorkTimes:February2,2011).
Availableat:http://www.nytimes.com/2011/02/03/health/03disease.html
16
HealthTopics(2011).
http://pewinternet.org Page15
Informationaboutalternativetreatments
Whenaskedwhotheythinkismorehelpfulwhentheyneedinformationaboutalternativetreatments,
63%ofadultschoosehealthprofessionalsoverothersources.Twentyfourpercentofadultssaythey
findtheadviceoffriends,family,andfellowpatientsmorehelpfulinthiscase.
A2008studybythePewInternetProjectandCaliforniaHealthCareFoundationfoundthat35%of
internetusershavelookedonlineforinformationaboutalternativetreatments.
17
Womenare
significantlymorelikelythanmentolookonlineforalternativetreatmentsandmedicines(37%,
comparedwith31%).Inaddition,adultsovertheageof65aresignificantlylesslikelythanyounger
adultstolookupalternativetreatmentsandmedicinesonline.
Arecommendationforadoctororspecialist
Sixtytwopercentofadultssaytheythinkhealthprofessionalsaremorehelpfulthanpeersourceswhen
itcomestogettingarecommendationforadoctororspecialist.Twentysevenpercentofadultsprefer
toaskfriends,family,andfellowpatientsforthistypeofadvice.
Olderadultsaremuchmorelikelythanyoungeronestosayhealthprofessionalsopinionsaremore
helpful:72%ofadultsages65andoldersaythis,comparedwith56%of1829yearolds,forexample.
Inourpreviousreportaboutthehealthtopicspeoplesearchforonline,wefoundthat44%ofinternet
userslookonlineforinformationaboutdoctorsorotherhealthprofessionals.
18
Caregivers,women,
thosewithacollegedegree,andparentswithchildrenlivingathomeleadallothergroupsinlooking
onlineforinformationaboutdoctorsorotherhealthprofessionals.Halfofinternetusersineachof
thesegroupslookonlineforthistypeofhealthinformation.
GenerationXinternetusers(ages3445)arethemostlikelyagegrouptolookonlineforinformation
abouthealthprofessionals:51%,comparedwith41%ofinternetusersintheir20sand42%ofinternet
usersbetween5664yearsold,forexample.
Arecommendationforahospitalorothermedicalfacility
Healthprofessionalsarealsopreferredbyamajorityofadults(62%)whenitcomestogettinga
recommendationforahospitalorothermedicalfacility.Twentysevenpercentofadultssaytheythink
othersources,suchasfriends,family,andfellowpatients,aremorehelpfulingatheringthistypeof
information.
Again,olderadultsareconsiderablymorelikelythanyoungeradultstoturntohealthprofessionalsfor
thistypeofinformation:72%ofadultsages65andolder,comparedwith54%of1829yearolds.

17
TheSocialLifeofHealthInformation(2009)
18
HealthTopics(2011).
http://pewinternet.org Page16
Inourpreviousreportaboutthehealthtopicspeoplestudyonline,wefoundthat36%ofinternetusers
lookonlineforinformationabouthospitalsorothermedicalfacilities.
19
Caregivers,women,thosewitha
collegedegree,thosebetween3445yearsold,andparentswithchildrenlivingathomeleadallother
groupsinlookingonlineforinformationaboutthistopic.Fourinteninternetusersineachofthese
groupslookonlineforinformationabouthospitalsorothermedicalfacilities.
Emotionalsupportindealingwithahealthissue
Aclearmajorityofadultsfavorfriends,family,andfellowpatientswhentheyneedemotionalsupportin
dealingwithahealthissue:59%saythat,comparedwith30%ofadultswhosaytheyrelyonhealth
professionalsforsuchsupport.
Womenaremorelikelythanmentosaytheyrelyonfriends,family,andfellowpatientsforemotional
support(64%vs.54%).Youngeradultsaremorelikelythanolderadultstoturntofriends,family,and
fellowpatientsforemotionalsupportconcerningahealthissue:70%of1829yearoldssaythis,
comparedwith64%of3049yearolds,55%of5064yearolds,and42%ofadultsages65andolder.
Oneadultlivingwitharareconditionwroteaboutthewayfriendsandfamilyformedasafetynet
aroundher:Peopleliketohelp.Andinthefaceofanincurable,rare,awfuldiseasethatleavesmeat
timeshelpless,peoplenotonlyliketohelp,lettingthemhelpisagiftIcangivethem,awaytotake
someofthepowerandfightbackagainstthecurrentlyunfightable.
Atthesametime,therearepatientswhodescribedthetendernessandattachmenttheyfeltfrom
medicalprofessionals.Anotheradultlivingwitharareconditionwrotemovinglyofthatexperience:I
havebeenexceedinglyluckytohavebeenlovedandsupportedbysomanyincludingthemanymedical
practitionersthatInowcallfriends(aswellascolleaguesinmycontinuingcare).
Aquickremedyforaneverydayhealthissue
Halfofadults(51%)saytheyfindfriends,family,andfellowpatientsmorehelpfulthanprofessional
sourceswhentheyneedaquickremedyforaneverydayhealthissue.Fortyonepercentpreferadvice
fromadoctorornurse.
Thegenderandagebreakdownsaresimilartothequestionregardingpracticaladviceforcopingwith
daytodayhealthsituations:womenandyoungeradultsprefertogatherquickremediesfrompeers
whilemenandolderadultspreferprofessionals.
Onerespondentcommented,Whentimeisoftheessence,searchontheinternetistheonlywayto
timetravel.
Practicaladviceforcopingwithdaytodayhealthsituations
Peoplearesplitevenlywhenitcomestodaytodaycaretips:43%ofadultssayhealthprofessionalsare
morehelpfuland46%ofadultssayfriends,family,andfellowpatientsarethebettersource.

19
HealthTopics(2011).
http://pewinternet.org Page17
Womenaremorelikelythanmentorelyonfriends,family,andfellowpatientsforpracticaladvice:51%,
comparedwith40%.
Olderadultsaresignificantlymorelikelytosayhealthprofessionalsarethemorehelpfulsourcefor
copingstrategies:55%ofadultsages65andolder,comparedwith45%of5064yearolds,40%of3049
yearolds,and38%of1829yearolds.
Onemothercaringforachildwitharareconditionwrote,Inmyexperienceofdealingwitharare,
serious,andchronicdisorder,specialistdoctorsaretypicallythegotopeopleformedicaladvice
involvingmedicationorsurgerySometimesthedoctorshavenotbeenasknowledgeableaboutthe
feedingissueswhichareofgreatimportance.Sometimesotherparentshavesomereallygoodadvicein
theseareas.Shequalifiesthatstatement,however,notingtheseriousnessofthesituationsheand
otherpeopleface:Wepatientsandcaregiversofpatientshavetobeverycarefulnottogeneralize
fromourexperiences.Sharinginformationaboutexperienceswithmedicationsandsymptomisvery
helpfulaslongasextrapolationsarenotmade.

http://pewinternet.org Page18
Methodology
NationalTelephoneSurvey:Methodology
AllnumericalresultsinthisreportarebasedondatafromtelephoneinterviewsconductedbyPrincetonSurvey
ResearchAssociatesInternationalbetweenAugust9andSeptember13,2010,amongasampleof3,001adults,
age18andolder.InterviewswereconductedinEnglishandSpanish.Forresultsbasedonthetotalsample,one
cansaywith95%confidencethattheerrorattributabletosamplingisplusorminus2.5percentagepoints.For
resultsbasedoninternetusers(n=2,065),themarginofsamplingerrorisplusorminus2.9percentagepoints.In
additiontosamplingerror,questionwordingandpracticaldifficultiesinconductingtelephonesurveysmay
introducesomeerrororbiasintothefindingsofopinionpolls.

Acombinationoflandlineandcellularrandomdigitdial(RDD)sampleswasusedtorepresentalladultsinthe
continentalUnitedStateswhohaveaccesstoeitheralandlineorcellulartelephone.Bothsampleswereprovided
bySurveySamplingInternational,LLC(SSI)accordingtoPSRAIspecifications.Thelandlinesampleforthissurvey
wasdesignedtogeneralizetotheU.S.adultpopulationandtooversampleAfricanAmericansandHispanics.To
achievetheseobjectivesinacosteffectivemanner,thedesignusesstandardlistassistedrandomdigitdialing
(RDD)methodology,buttelephonenumbersaredrawndisproportionatelyfromtelephoneexchangeswithhigher
thanaveragedensityofAfricanAmericanand/orHispanichouseholds.Thecellularsamplewasnotlistassisted,
butwasdrawnthroughasystematicsamplingfromdedicatedwireless100blocksandsharedservice100blocks
withnodirectorylistedlandlinenumbers.

Newsamplewasreleaseddailyandwaskeptinthefieldforatleastfivedays.Thesamplewasreleasedin
replicates,whicharerepresentativesubsamplesofthelargerpopulation.Thisensuresthatcompletecall
procedureswerefollowedfortheentiresample.Atleast7attemptsweremadetocompleteaninterviewata
sampledtelephonenumber.Thecallswerestaggeredovertimesofdayanddaysoftheweektomaximizethe
chancesofmakingcontactwithapotentialrespondent.Eachnumberreceivedatleastonedaytimecallinan
attempttofindsomeoneavailable.Forthelandlinesample,halfofthetimeinterviewersfirstaskedtospeakwith
theyoungestadultmalecurrentlyathome.Ifnomalewasathomeatthetimeofthecall,interviewersaskedto
speakwiththeyoungestadultfemale.Fortheotherhalfofthecontactsinterviewersfirstaskedtospeakwiththe
youngestadultfemalecurrentlyathome.Ifnofemalewasavailable,interviewersaskedtospeakwiththe
youngestadultmaleathome.Forthecellularsample,interviewswereconductedwiththepersonwhoanswered
thephone.Interviewersverifiedthatthepersonwasanadultandinasafeplacebeforeadministeringthesurvey.
Cellularsamplerespondentswereofferedapostpaidcashincentivefortheirparticipation.Allinterviews
completedonanygivendaywereconsideredtobethefinalsampleforthatday.

Disproportionatesamplingandnonresponseintelephoneinterviewscanproducebiasesinsurveyderived
estimates.Thedatasetwasweightedintwostages.Thefirststageofweightingcorrectedforthedisproportionate
landlinesampledesignandalsoaccountedfortheoverlappinglandlineandcellularsampleframesaswellas
differentprobabilitiesofselectionassociatedwiththenumberofadultsinthehousehold.Thesecondstageof
weightingmatchedoverallsampledemographicstopopulationparameters.Thedemographicweighting
parametersarederivedfromaspecialanalysisofthemostrecentlyavailableCensusBureausMarch2009Annual
SocialandEconomicSupplement.Thisanalysisproducespopulationparametersforthedemographic
characteristicsofadultsage18orolder.Theseparametersarethencomparedwiththesamplecharacteristicsto
constructsampleweights.Theweightsarederivedusinganiterativetechniquethatsimultaneouslybalancesthe
distributionofallweightingparameters.
http://pewinternet.org Page19
Followingisthefulldispositionofallsampledtelephonenumbers:

Table1:SampleDisposition
Landline Cell
53,160 17,075 TotalNumbersDialed
2,613 441 Nonresidential
2,430 32 Computer/Fax
21 Cellphone
27,936 6,428 Othernotworking
4,308 311 Additionalprojectednotworking
15,852 9,863 Workingnumbers
29.8% 57.8% WorkingRate
1,436 104 NoAnswer/Busy
2,734 2,370 VoiceMail
84 17 OtherNonContact
11,598 7,372 Contactednumbers
73.2% 74.7% ContactRate
1,020 1,027 Callback
8,303 4,597 Refusal
2,275 1,748 Cooperatingnumbers
19.6% 23.7% CooperationRate
158 60 LanguageBarrier
646 Child'scellphone
2,117 1,042 Eligiblenumbers
93.1% 59.6% EligibilityRate
http://pewinternet.org Page20
116 42 Breakoff
2,001 1,000 Completes
94.5% 96.0% CompletionRate
13.6% 17.0% ResponseRate

Thedispositionreportsallofthesampledtelephonenumberseverdialedfromtheoriginaltelephonenumber
samples.Theresponserateestimatesthefractionofalleligiblerespondentsinthesamplethatwereultimately
interviewed.AtPSRAIitiscalculatedbytakingtheproductofthreecomponentrates:
o Contactratetheproportionofworkingnumberswherearequestforinterviewwasmade
o Cooperationratetheproportionofcontactednumberswhereaconsentforinterviewwasatleast
initiallyobtained,versusthoserefused
o Completionratetheproportionofinitiallycooperatingandeligibleinterviewsthatwerecompleted
Thustheresponserateforthelandlinesamplewas13.6percent.Theresponserateforthecellularsamplewas
17.0percent.

http://pewinternet.org Page21
NationalTelephoneSurvey:Questions
Q6ab Doyouusetheinternet,atleastoccasionally?Doyousendorreceiveemail,atleastoccasionally?

CURRENT
% 74 Yes
26 No
* Dontknow
* Refused

Q17 Areyounowlivingwithanyofthefollowinghealthproblemsorconditions?

YES NO
DONT
KNOW REFUSED
a. Diabetesorsugardiabetes
Current 11 89 * *
b. Highbloodpressure
Current 24 75 1 *
c. Asthma,bronchitis,emphysema,orotherlung
conditions
Current 12 88 * *
d. Heartdisease,heartfailureorheartattack
Current 6 94 * *
e. Cancer
Current 2 97 * *
f. AnyotherchronichealthproblemorconditionI
haventalreadymentioned
Current 17 82 * 1

Q18 Inthelast12months,haveyoupersonallyfacedaseriousmedicalemergencyorcrisis?
CURRENT

% 12 Yes
88 No
* Dontknow
* Refused

Q20 IsthereanyoneclosetoyouwhohasaCHRONICmedicalcondition,suchasasthma,diabetes,heartdisease,high
bloodpressure,cancer,oranotherchroniccondition?
CURRENT

DEC2008
20

% 47 Yes 49
53 No 50
* Dontknow *
* Refused 1

Q21 Inthelast12months,hasanyoneclosetoyoufacedaseriousmedicalemergencyorcrisis?
CURRENT

% 27 Yes
72 No
* Dontknow
* Refused

20
InDecember2008,questionwordingwasIsthereanyoneclosetoyouwhohasaCHRONICmedicalcondition,
suchasasthma,diabetes,heartdisease,highbloodpressure,orcancer?
http://pewinternet.org Page22

Q24 Apartfromlookingforinformationonline,therearemanydifferentactivitiesrelatedtohealthandmedicalissuesa
personmightdoontheinternet.Imgoingtoreadalistofonlinehealthrelatedactivitiesyoumayormaynothave
done.Haveyou
YES NO DONTKNOW REFUSED
d.Goneonlinetofindotherswhomighthavehealth
concernssimilartoyours
Currentinternetusers 18 82 0 *

Q30 ThinkingabouttheLASTtimeyouhadahealthissue,didyougetinformation,careorsupportfrom[INSERT;
RANDOMIZE]?[IFYESANDINTERNETUSER:DidyouinteractwiththemONLINEthroughtheinternetoremail,
OFFLINEbyvisitingtheminpersonortalkingonthephone,orBOTHonlineandoffline?]

YES,
ONLINE
YES,
OFFLINE YES, BOTH
NO,NOTA
SOURCE
DONT
KNOW REFUSED
a. Adoctororotherhealthcare
professional 1 65 4 29 * *
b. Friendsandfamily 1 41 12 44 1 *
c. Otherswhohavethesamehealth
condition 1 15 4 77 2 *

Q32 Overall,whodoyouthinkismorehelpfulwhenyouneed[INSERTFIRSTITEM]healthprofessionalslikedoctors
andnurses,ORothersources,suchasfellowpatients,friendsandfamily?Andwhoismorehelpfulwhenyouneed
[INSERTNEXTITEM;RANDOMIZE]?READASNECESSARY:Professionalsourceslikedoctorsandnurses,ORother
sources,suchasfellowpatients,friendsandfamily?

PRO
FESSIONALS
OTHER
SOURCES
(VOL. )BOTH
EQUALLY DONTKNOW REFUSED
a. Anaccuratemedicaldiagnosis 91 5 2 2 *
b. Emotionalsupportindealingwitha
healthissue 30 59 5 4 2
c. Practicaladviceforcopingwithdayto
dayhealthsituations 43 46 6 3 1
d. Informationaboutalternative
treatments 63 24 5 6 1
e. Informationaboutprescriptiondrugs 85 9 3 3 1
f. Aquickremedyforaneverydayhealth
issue 41 51 4 3 1
g. Arecommendationforadoctoror
specialist 62 27 6 4 1
h. Arecommendationforahospitalor
othermedicalfacility 62 27 6 4 1

CARE2 Inthepast12months,haveyouprovidedUNPAIDcaretoanadultrelativeorfriend18yearsoroldertohelpthem
takecareofthemselves?Unpaidcaremayincludehelpwithpersonalneedsorhouseholdchores.Itmightbemanaginga
personsfinances,arrangingforoutsideservices,orvisitingregularlytoseehowtheyaredoing.Thispersonneednotlivewith
you.

[IFRESPONDENTASKSDOESGIVINGMONEYCOUNT:]Asidefromgivingmoney,doyouprovideanyothertypeofunpaidcare
tohelpthemtakecareofthemselves,suchashelpwithpersonalneeds,householdchores,arrangingforoutsideservices,or
otherthings?

CURRENT
% 27 Yes
72 No
* Dontknow
* Refused

http://pewinternet.org Page23
CARE3 Doyouprovidethistypeofcaretojustoneadult,ordoyoucareformorethanoneadult?
Basedonthosewhoprovideunpaidcaretoadults[N=790]

CURRENT
% 66 Oneadultonly
33 Providecaretomultipleadults
* Dontknow
* Refused

CARE4 Isthispersonaparentofyours,ornot?
CARE5 Areanyoftheadultsyoucareforaparentofyours,ornot?
Basedonthosewhoprovideunpaidcaretoadults[N=790]

CURRENT
% 38 Yes,parent
62 No,notaparent
* Dontknow
* Refused

CARE6 Inthepast12months,haveyouprovidedUNPAIDcaretoanyCHILDundertheageof18becauseofamedical,
behavioral,orotherconditionordisability?Thiscouldincludecareforongoingmedicalconditionsorseriousshortterm
conditions,emotionalorbehavioralproblems,ordevelopmentalproblems,includingmentalretardation.

CURRENT
% 5 Yes
94 No
* Dontknow
* Refused

OnlineSurvey:Methodology
ThePewInternetProjectadaptedquestionsfromournationaltelephonesurvey,inconsultationwith
PrincetonSurveyResearchAssociatesInternational(PSRAI)andtheNationalOrganizationforRare
Disorders(NORD).InDecember2010,NORDsentinvitationsto721patientorganizations,askingthem
tonotifymembers,aswellas212individualswhohadsignedupas"RareDiseaseDayAmbassadors."
Thetotalnumberofindividualswhowereinvitedtoparticipateinthesurveyisnotknown.Sincethe
dataarebasedonanonrandomsampleof2,156internetusers,amarginoferrorcannotbecomputed,
andtheresultsarenotprojectabletoanypopulationotherthantheinternetusersinthissample.
OnlineSurvey:Questions
1. Whatrarediseaseorconditionaffectsyouoralovedone?[OPENEND]

CURRENT
% 99 Gaveresponse
1 Noanswer

2. Areyouthepatientoristhepatientalovedone?

CURRENT
% 50 Imthepatient
36 Patientisalovedone
6 Both
9 Noanswer
http://pewinternet.org Page24
Whatisyourrelationshiptothepatient?(Ifmorethanonelovedonewithararediseaseorcondition,pleaseselectallthat
apply)
Basedonthosewhohavealovedonewithararediseaseorcondition[N=888]
CURRENT
% 50 Parentofpatient
22 Spouse/partner
17 Childofpatient
7 Sibling
9 Otherfamilymember
2 Friend
3 Other(Specify)
4 Noanswer
Note:Totalmayexceed100%duetomultipleresponses.

Manytimeswhenpeoplegetsick,theirfamily,friendsandevenmoredistantacquaintancescometogethertoprovideakindof
carenetwork.Didthishappeninyourcase?Whowasinthenetworkandwhatrolesdidtheyplayinprovidingcare?Please
shareanydetailsthatcometomind.[OPENEND]

CURRENT
% 80 Gaveresponse
20 Noanswer

3. Howlongdidittakeyouoryourlovedonetogetadiagnosis?

CURRENT
% 50 Within1year
15 13years
5 35years
9 5+years
11 Other
10 Noanswer

Pleaseexplainfurtherifyouwouldlike.[OPENEND]

CURRENT
% 60 Gaveresponse
40 Noanswer

4. Ifyouwish,pleasetellushowyoufoundoutaboutthiscondition.Wasthediagnosisprocessdifficult?Whatdidyou
learnthatyouwouldsharewithsomeonefacingasimilarsituation?[OPENEND]

CURRENT
% 77 Gaveresponse
23 Noanswer

5. Isthereatreatmentfortherarediseasethataffectsyouoryourlovedone?

CURRENT
% 52 Yes
28 No
20 Noanswer

http://pewinternet.org Page25
Ifyouwouldlike,pleasegiveussomeinformationaboutyoursearchfortreatments.Hasitbeenprettyeasyorprettydifficult?
Andhowaboutthetreatmentsthemselves?Howaretheygoing?Didyourcarenetworkplayaroleinfindingthetreatmentsor
helpingadministerthem?[OPENEND]

CURRENT
% 69 Gaveresponse
31 Noanswer

6. Istherearesearchcenterorclinicianworkingonapossibletreatmentforthediseasethataffectsyouoryourloved
one?

CURRENT
% 61 Yes
16 No
23 Noanswer

Pleaseexplainfurtherifyouwouldlike.[OPENEND]

CURRENT
% 52 Gaveresponse
48 Noanswer

7. Haveyouusedtheinternettofindclinicaltrials?

CURRENT
% 40 Yes
40 No
20 Noanswer

Soothersmightbenefitfromyourexperience,pleaselistanywebsitesorresourcesyouhaveusedtolookforclinicaltrials.
[OPENEND]

CURRENT
% 37 Gaveresponse
63 Noanswer

8.Thinkingabouthealthrelatedactivitiesyoumayormaynotdoonline,have
you
YES NO NOANSWER
a. Consultedonlinerankingsorreviewsofdoctorsorotherproviders
42 38 20
b. Consultedonlinerankingsorreviewsofhospitalsorothermedical
facilities
44 36 20
c. Consultedonlinereviewsofparticulardrugsormedicaltreatments
60 21 20
d. Postedareviewonlineofadoctor
11 68 21
e. Postedareviewonlineofahospital
7 72 21
f. Postedyourexperienceswithaparticulardrugormedicaltreatment
online
20 59 21

Whatotherhealthrelatedonlineactivitiesdoyoufinduseful?Pleaseshareanythingthatcomestomind.[OPENEND]

CURRENT
% 37 Gaveresponse
63 Noanswer

http://pewinternet.org Page26
9. Thinkingaboutthelasttimeyouhadahealthissue,didyougetinformation,careorsupportfromanyofthe
following?Ifso,pleasetellusifyouinteractedwiththemONLINEthroughtheinternetoremail,OFFLINEbyvisiting
theminpersonortalkingonthephone,orBOTHonlineandoffline.

YES,
ONLINE
YES,
OFFLINE YES, BOTH
NO,DIDN T
USETHIS
SOURCE
NO
ANSWER
a. Adoctororotherhealthcareprofessional
4 39 26 10 22
b. Friendsandfamily
5 20 33 18 25
c. Otherswhohavethesamehealthcondition
23 8 23 22 24

Pleaseexplainfurtherifyouwouldlike.[OPENEND]

CURRENT
% 15 Gaveresponse
85 Noanswer

10. Overall,whodoyouthinkismorehelpfulwhenyouneedeachofthefollowingkindsofinformationoradvicehealth
professionalslikedoctorsandnurses,ORothersources,suchasfellowpatients,friendsandfamily?

PROFESSIONAL
SOURCESARE
MOREHELPFUL
OTHER
SOURCESARE
MOREHELPFUL
BOTH
EQUALLY
HELPFUL
NO
ANSWER
a. Anaccuratemedicaldiagnosis
62 2 15 22
b. Emotionalsupportindealingwithahealthissue
5 40 32 23
c. Practicaladviceforcopingwithdaytodayhealth
situations
10 33 34 23
d. Informationaboutalternativetreatments
22 24 28 26
e. Informationaboutprescriptiondrugs
44 7 26 23
f. Aquickremedyforaneverydayhealthissue
19 25 31 25
g. Arecommendationforadoctororspecialist
29 10 37 23
h. Arecommendationforahospitalorothermedical
facility
29 10 38 24

Weareespeciallyinterestedinanystoriesyoucantellrelatedtothisquestion.Pleaseshareyourexperiencesandinsights.
[OPENEND]

CURRENT
% 24 Gaveresponse
76 Noanswer