pew p2phealthcare 2011

8/12/2019 Pew P2PHealthcare 2011

1/26

Peerto

peer

healthcare

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


2/26

http://pewinternet.org Page2

SummaryofFindings

Theinternetgivespatientsandcaregiversaccessnotonlytoinformation,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

conditions

have

sought

such

help

online.

Othergroupswhoarelikelytolookonlineforpeoplewhosharetheirsamehealthconcernsinclude:

internetuserswhoarecaringforalovedone;internetuserswhoexperiencedamedicalcrisisinthepast

year;andinternetuserswhohaveexperiencedasignificantchangeintheirphysicalhealth,suchas

weightlossorgain,pregnancy,orquittingsmoking.

Someofthemostnotableinteractionsinvolvepeoplewhomeetonlineforthefirsttime.Therewere

numerousexamplesofthesepowerfullongdistanceconnectionsinouronlinesurveyofpatientsand

caregiverswhotakepartinrarediseasecommunities.Oneadultlivingwitharareconditiondescribed

howsheconnectedwithanotherpatientonline,bonded,andthenenrichedthefriendshipwithin

personencounters:

The

first

time

Imet

another

patient,

face

to

face,

Isobbed.

Iwas

overjoyed

and

begantocommunicatewiththemonaregularbasisandmynetworkgrew.


3/26


Inthemomentofneed,mostpeopleturntoahealthprofessionalforinformation,care,orsupport.

Whenaskedaboutthelasttimetheyhadahealthissue,71%ofadultsintheU.S.saytheyreceived

information,care,orsupportfromahealthprofessional.Fiftyfivepercentofadultssaytheyturnedto

friendsand

family.

Twenty

one

percent

of

adults

say

they

turned

to

others

who

have

the

same

health

condition.

Themajorityofhealthcareconversationshappenoffline:Just5%ofadultssaytheyreceivedonline

information,care,orsupportfromahealthprofessional,13%saytheyhadonlinecontactwithfriends

andfamily,and5%saytheyinteractedonlinewithfellowpatients.

Inouronlinesurvey,patientsandcaregiverswereaskedthesamequestionaboutthelasttimetheyhad

ahealthissue.Thepeoplelivingwithrarediseasewhorespondedtothesurveyfaroutpacedallother

groups,includingthoselivingwithchronicconditions,intappingthewisdomoftheirpeernetwork.

Morethanhalfofrarediseaserespondentssaytheyturnedtofamilyandfriends.Anothermajoritysay

theyturned

to

others

who

have

the

same

health

condition.

Amotherofasmallchildwitharareconditionwroteaboutthelifelineshehasfoundonline:Whena

diseaseissorareandtherearenofolksinyourtown,andfewinyourstatewhoaregoingthroughwhat

youaregoingthrough,youneedasupportgroupthatencompassespeoplefromallovertheworld.

Gettingtoknowpeoplethroughthedisorderhasbeenanamazingexperienceandhascreated

incrediblywonderfulfriendshipsandties.

Peopleturntodifferentsourcesfordifferentkindsofinformation.

In

the

national

survey,

adults

were

asked

which

group

is

more

helpful

when

they

need

certain

types

of

informationorsupport:healthprofessionalslikedoctorsandnursesorpeerslikefellowpatients,

friends,andfamily.Thepatternoftheirresponseswasprettyclear:Whentheissueinvolvedtechnical

issuesrelatedtoahealthissue,professionalsheldsway.Whentheissueinvolvedmorepersonalissues

ofhowtocopewithahealthissueorgetquickrelief,thennonprofessionalswerepreferredbymost

patients.


4/26


Whoismorehelpfulwhenyou

need

Professionalsourceslikedoctorsand

nurses

Fellowpatients,

friends,and

family

Bothequally

Timeswhenprofessionalsmattermost

Anaccuratemedicaldiagnosis 91% 5% 2%

Informationaboutprescriptiondrugs

85 9 3

Informationaboutalternativetreatments

63 24 5

Arecommendationforadoctororspecialist

62 27 6

Arecommendationforahospitalorothermedicalfacility

62 27 6

Timeswhen

non

professionals

matter

most

Emotionalsupportindealingwithahealthissue

30 59 5

Aquickremedyforaneverydayhealthissue

41 51 4

Timeswhenthetwogroupsareequallyhelpful

Practicaladviceforcopingwithdaytodayhealthsituations

43 46 6

Source:PewResearchCentersInternet&AmericanLifeProject,August9September13,2010Survey.N=3001adultsandthemarginoferroris+/ 3percentagepointsforthefullsample.

Manypeoplefindtheinternettobeavaluabletool,whethertheyareusingittosearchforaquick

answerorgainadeeperunderstandingofanewtreatmentoptionorprescription.Asonerespondentin

theonlinesurveycommented,'Whentimeisoftheessence,searchontheinternetistheonlywayto

timetravel.Theinternetisalso,asthisstudyshows,awaytotapintoourinstinctstogathertogether,

helpotherpeople,andbehelpedourselves.


5/26


Acknowledgements

ThisreportistheresultofcollaborationbetweenthePewInternetProjectand

theCaliforniaHealthCareFoundation.

ThePew

Internet

&

American

Life

Project

is

an

initiative

of

the

Pew

Research

Center,

anonprofit

fact

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.


6/26


MainReport

PeertoPeerHealth

The

internet

provides

access

not

only

to

information,

but

also

to

each

other.

ThePewInternetProjectandCaliforniaHealthCareFoundationhavelongbeeninterestedintheimpact

oftheinternetonhealthandhealthcare,measuringhowmanypeoplehaveaccesstotechnology,how

theyuseittogatherinformation,andwhattopicsareofgreatestinterest.1 Aprimaryfindingofour

researchisthathealthprofessionalscontinuetoplayacentralroleinmostpeoplesliveswhenitcomes

tobeingsick,gettingwell,andmaintaininggoodhealth,nomatterthelevelofinternetaccesssomeone

mayhave.2

However,theinternethasnotonlyfacilitatedincreasedpatientsaccesstoinformation,butithasalso

enablednewpathwaysforpatientstofindandhelpeachother.Socialnetworksites,blogs,online

communities,email

groups

and

listservs,

and

other

tools

allow

people

to

express

themselves

in

ways

thatrespondimmediatelytopeople.Butthosemessagesalsopersistandareoftensearchableandcan

helppatientsinthefuture.Peopleusetheinternettofindotherswhosharethesameinterests,

whetherinpolitics,hobbies,music,health,oranyothertopic,nomatterwheretheymaylive.Social

toolsalsodeepenpeoplesconnectionstogroupstheyjoinofflineanddrawthemtojoinnewgroups

formedonline.Indeed,46%ofinternetuserswhoareactiveingroupssaytheinternethashelpedthem

tobeactiveinmoregroupsthanwouldotherwisebethecase.3

Overthelastfewyears,thepopularimaginationhasbeencapturedbythepossibilitythatpeoplecan

usedigitaltoolstoreorganizesegmentsofsociety.4 Arevolutioninhealthcareisrunningalonga

paralleltrack,

mixing

peoples

instincts

to

share

knowledge

with

the

social

media

that

make

it

easy,

creatingwhatmightbecalledpeertopeerhealthcare.

Takingthesociallifeofhealthinformationtothenextlevel.

Thisreportisbasedinpartonanationaltelephonesurveyof3,001adultswhichcapturesanestimateof

howwidespreadthisactivityisintheU.S.Allnumericaldataincludedinthereportisbasedonthe

telephonesurvey.Theotherpartoftheanalysisisbasedonanonlinesurveyof2,156membersofthe

1Health

Topics,

by

Susannah

Fox.

(Pew

Internet

Project

and

California

HealthCare

Foundation:

February

1,

2011).

Availableat:http://www.pewinternet.org/Reports/2011/HealthTopics.aspx2TheSocialLifeofHealthInformation,bySusannahFoxandSidneyJones.(PewInternetProjectandCalifornia

HealthCareFoundation:June11,2009).Availableat:http://www.pewinternet.org/Reports/2009/8TheSocialLife

ofHealthInformation.aspx3TheSocialSideoftheInternet,byLeeRainie,KristenPurcell,andAaronSmith.(PewInternetProject:January

18,2011).Availableat:http://www.pewinternet.org/Reports/2011/TheSocialSideoftheInternet.aspx4ThePoliticalPowerofSocialMedia,byClayShirky.(ForeignAffairs:January/February2011).Availableat:

http://www.foreignaffairs.com/articles/67038/clayshirky/thepoliticalpowerofsocialmedia


7/26


NationalOrganizationforRareDisorders(NORD)whowroteshortessaysabouttheiruseoftheinternet

incaringforthemselvesorfortheirlovedones.

NORDrepresentstheapproximately25millionAmericanslivingwithararedisease,whichisdefinedas

affectingfewerthan200,000peopleintheU.S.Thepeoplewhoparticipatedintheonlinesurvey

reportedawide

array

of

conditions,

such

as

Marfans

Syndrome,

congenital

hyperinsulinism,

and

aplasticanemia,tonamejustafew.Inreadingthoseessays,itbecomesclearthatthepeoplewho

respondedtothesurveyhavetakenthesociallifeofhealthinformationtothenextlevel.Manyofthem

forgedalongpathtowardadiagnosis(iftheyevenhaveone)onlytofindoutthatthiswassimplythe

startofanotherjourney.

Peoplelivingwithraredisease,theirownoralovedones,havehonedtheirsearching,learning,and

sharingskillstoafinepoint.Theyendlesslyscanresourcesforcluestotrytocopewithandmitigatethe

inevitablecomplicationsandsetbacksthatcomefromrarediseases.Whatwasonceasolitary

expeditionforonepersonoronefamily,however,hasbecomeacollectivepursuittakenonbybandsof

brothers andsistersinarmswhomaynevermeetupinperson.

ManyAmericansturntofriendsandfamilyforsupportandadvicewhentheyhaveahealthproblem.

Thisreportshowshowpeoplesnetworksareexpandingtoincludeonlinepeers,particularlyinthe

crucibleofraredisease.

Wecansaythingstoeachotherwecan'tsaytoothers.

Oneinfiveinternetusers(18%)havegoneonlinetofindotherswhomighthavehealthconcernssimilar

totheirs.

Internet

users

ages

65

and

older

are

less

likely

than

younger

internet

users

to

have

done

this

(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.


8/26


Lookingonlineforsomeonelikeyou:Healthstatus

Percentageofinternetusersineachgroupwhohavelookedonlineforotherswithsimilar

health

concerns

Allinternetusers 18%

Caregiverstatus

Currentlycaringforalovedone 26

Notacaregiver 15

Recentmedicalcrisis

Experiencedwithinpastyearselforsomeoneclose

23

Norecentexperience 16

Recentpersonalhealthchange

Experiencedwithinpastyear 24

Norecentexperience 17

Chronicdiseasestatus

Oneormorechronicconditions 23

Noconditions 15

Disabilitystatus

Oneormoredisabilities(N=439) 20

Nodisabilities 18

Source:PewResearchCentersInternet&AmericanLifeProject,August9September13,2010Survey.N=2065internetusersage18+.Marginoferroris+/ 3percentagepointsforthefullsample.Marginsoferrorforsubpopulationsarehigher.

Internetuserswhohaveexperiencedarecentmedicalemergency,theirownorsomeoneelses,arealso

morelikelythanotherinternetuserstogoonlinetotrytofindsomeonewhosharestheirsituation:

23%,comparedwith16%.Thisfitsthepatternobservedinotherresearchthatpeoplegoingthrougha

medicalcrisisarevoraciousinformationconsumers:85%saytheylookonlineforhealthinformation,

comparedwith77%ofinternetuserswhohavenothadthatexperienceinthepastyear.5

Internetuserswhohaveexperiencedasignificantchangeintheirphysicalhealth,suchasweightlossor

gain,pregnancy,orquittingsmokingarealsomorelikelythanotherinternetuserstohavelookedonline

forsomeone

like

them.

This

is

not

new

behavior,

of

course,

as

any

member

of

Weight

Watchers

or

a

newmothersplaygroupcanattest.However,theinternetwidensthenetworkavailabletopeopleand

allowsbehaviorchangetospreadinnewways.Exsmokerscansupporteachotherthroughnicotine

5HealthTopics(2011).


9/26


cravingsatanytimeofthedayornight,forexample,andstudieshaveshownthatthemorehelp

someonereceives,themorelikelytheywillhelpsomeoneelse.6

Rarediseaseseemstoamplifythisneedtospreadonesnetworkfarandwide.Andthismoreextended

networksometimescanbringspecialbenefits.Patientssaytheywillconfidetoothersintheseextended

networksin

ways

that

are

sometimes

hard

to

confide

to

their

closest

family

members

and

friends.

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

Ournational

phone

survey

found

that

26%

of

internet

users

caring

for

aloved

one

say

they

have

looked

onlineforsomeonewithsimilarhealthconcerns,comparedwith15%ofinternetuserswhoarenot

currentlycaringforalovedone,eitheranadultorachild.8Inouronlinesurvey,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.

6BuildingaResearchAgendaforParticipatoryMedicine,bySusannahFox(epatients.net:October11,2010).

Availableat:http://epatients.net/archives/2010/10/buildingaresearchagendaforparticipatorymedicine.html

Seealso:

Connected:

The

Surprising

Power

of

Our

Social

Networks

and

How

They

Shape

Our

Lives,

by

Nicholas

ChristakisandJamesFowler(2009).7AFightingChance,byJordanaHolovach,inUncommonChallenges;SharedJourneys.(SirenInteractive: 2011).

See:http://press.sireninteractive.com/8Thewordcaregiversisusedthroughoutthisreporttorefertopeoplewho,inthepast12months,have

providedunpaidcaretoaparent,child,friend,orotherlovedone.Unpaidcareforanadultmayincludehelpwith

personalneedsorhouseholdchores,managingfinances,arrangingforoutsideservices,orvisitingregularlytosee

howtheyaredoing.Unpaidcaretoachildincludescareforanongoingorseriousshorttermcondition,emotional

orbehavioralproblems,ordevelopmentalproblems.


10/26


IntheMomentofNeed

Healthprofessionals,friends,familymembers,andfellowpatientsareallpartof

themix.

Whenasked

about

the

last

time

they

had

ahealth

issue,

71%

of

adults

in

the

U.S.

say

they

received

information,care,orsupportfromahealthprofessional.Fiftyfivepercentofadultssaytheyturnedto

friendsandfamily.Twentyonepercentofadultssaytheyturnedtootherswhohavethesamehealth

condition.

Themajorityoftheseinteractionshappenoffline:just5%ofadultssaytheyreceivedonlineinformation,

care,orsupportfromahealthprofessional,13%saytheyhadonlinecontactwithfriendsandfamily,

and5%saytheyinteractedonlinewithfellowpatients.

The

last

time

you

had

a

health

issue,

did

yougetinformation,care,orsupport

from

Yes,

onlineYes,

offlineYes,

bothNot

a

source

Adoctororotherhealthcareprofessional

1% 66% 4% 29%

Friendsandfamily 1 42 12 44

Otherswhohavethesamehealthcondition

1 16 4 77

Source:PewResearchCentersInternet&AmericanLifeProject,August9September13,2010Survey.N=3001adultsandthemarginoferroris+/ 3percentagepointsforthefullsample.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%)has

done

so.

In

all

cases,

most

of

the

communication

happens

offline.

Rareconditionsnecessitateonlineconsultationwithpeers.

AsignificantlimitationoftheonlinesurveyweconductedwithNORDisitsrelianceonasampleof

peoplewhohavealreadyfoundacommunityofthosewhosharetheircondition.Sinceitisnota

representativesampleofpeoplelivingwithraredisease,theresponsescannotbedirectlycomparedto


11/26


thenationaltelephonesurveyresults.However,itisinterestingtolookatthepatternsinthedata,and

inthiscase,thepatternsarestrikinglydifferentfromtheresultswegotinthetelephonesurvey.

Whenaskedthesamequestionaboutthelasttimetheyhadahealthissue,thepeoplelivingwithrare

diseasewhorespondedtothesurveyfaroutpacedallothergroups,includingthoselivingwithchronic

conditions,in

tapping

the

wisdom

of

their

peer

network.

More

than

half

of

rare

disease

respondents

say

theyturnedtofamilyandfriends.Anothermajoritysaytheyturnedtootherswhohavethesamehealth

condition.Muchoftheirinteractionwithfriends,family,andfellowpatientsorcaregivershappens

onlinebynecessity,sincetheyareunlikelytoliveneartothepeoplewhosharetheirconditions.

Yetagain,itiscriticaltonotethathealthprofessionalswerethemostpopularchoiceevenamongthis

highlynetworkedgroupofpeoplelivingwithrareconditions.Theoftexpressedfearthatpatientsare

usingtheinternettoselfdiagnoseandselfmedicatewithoutreferencetomedicalprofessionalsdoes

notemergeinnationalphonesurveysorinthisspecialrarediseasecommunitysurvey. Advicefrom

peersisasupplementtowhatadoctorornursemayhavetosayaboutahealthsituationthatarises.

Awoman

who

cares

for

her

husband

describes

how

she

relies

on

both

groups

to

navigate

to

the

informationsheneeds:Wehavefoundthatwegethelpfulinfofrombothdoctorsandother

patients/caregivers.Otherpatients/caregiversarealmostmorehelpfulwhenitcomestothisdisease

becauseasagrouptheyhavemoreinfothananyoneindividualdoctorhas.Wehavegotteninfofrom

otherpatients/caregiversthatwe'vethentoldtheoncologistaboutsohecouldlookintoit.Sometimes

wefeellikewe'reeducatingourdoctormorethanheiseducatingus.

Onemotherofanowadultchildwitharareconditionwroteabouthowmuchshevaluestheadvocacy

groupfoundedbyagroupofpatients.Shewrites,Expertswhohavesuperiorinformationthanthebest

hepatologistsaretheretoanswerourquestions.Patientsandcaregiversarethereforeachotherandno

questionremains

unanswered.

Iwish

we

had

had

this

group

of

2,000

with

us

at

the

beginning.

Amotherofasmallchildwitharareconditionwritesaboutthelifelineshehasfoundonline:Whena

diseaseissorareandtherearenofolksinyourtown,andfewinyourstatewhoaregoingthroughwhat

youaregoingthrough,youneedasupportgroupthatencompassespeoplefromallovertheworld.

Gettingtoknowpeoplethroughthedisorderhasbeenanamazingexperienceandhascreated

incrediblywonderfulfriendshipsandties.

Healthprofessionalsretaintheirroleasexpertsinacertainfieldorcondition,butinthesedisease

communities,eachpersonisanexpertinobservingtheeffectsofadiseaseoratreatmentontheirown

oralovedonesbodyormind.Inthisway,rarediseasepatientsandcaregiverswhogathertogether

onlineareanexampleofasmartgroup,theelementsofwhichJamesSurowieckidescribedinhis

book,TheWisdomofCrowds: Theyarediverseanddecentralized,yetabletopoolknowledgeand

summarizetheirobservations,nomatterhoweccentricorindividualtheymaybe.9

9TheWisdomofCrowds,byJamesSurowiecki.(RandomHouse:2004).See:

http://www.randomhouse.com/features/wisdomofcrowds/index.html


12/26


Ourfindingsalsoechowhathasbeenfoundinotherresearch.A2007studyoftheAssociationofCancer

OnlineResourcesfoundthatinformationexchange,notsimplyemotionalsupport,wastheprimary

driverforcommunitymembers.Indeed,themostcommonexpressionsofsupportwereoffersof

technicalinformationandexplicitadviceabouthowtocommunicatewithhealthcareproviders.10

PatientsLikeMe,anonlinequantitativepersonalresearchplatformforpatients,haspublishedseveral

studiesnoting

the

benefits

gained

by

people

who

share

personal

health

data

and

tips

about

their

conditions.11Inone2010study,patientsreportedmakingmoreinformedtreatmentdecisionsasa

resultofusingthesite,particularlyaroundmanagingsideeffects.12CureTogetherisanotherexample

ofusingpatientcontributeddatatocrowdsourceanswerstohealthquestionsonawiderangeof

topics.13

10HowCancerSurvivorsProvideSupportonCancerRelatedInternetMailingLists,byAndreaMeier,PhD;

ElizabethJLyons,

MPH;

Gilles

Frydman;

Michael

Forlenza,

MPH,

PhD;

Barbara

KRimer,

DrPH.

(Journal

of

Medical

InternetResearch:Vol.9,No.2).Availableat:http://www.jmir.org/2007/2/e12/11

Seehttp://www.patientslikeme.com/research12

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

CureTogether CrowdsourcedPatientExperience,byAlexandraCarmichael.(AshokaChangemakers:August

24,2010).Availableat:http://www.changemakers.com/node/88624


13/26


DifferentSourcesforDifferentKindsofInformation

Professionalsorpeers?Both.

InMarch1999,TomFerguson,amedicaldoctorandselfcareadvocate,andBillKelly,cofounderof

Sapient

Health

Network,

fielded

a

survey

of

an

online

patient

community

which

asked

members

to

rate

themostusefulresourcefortwelvedimensionsofmedicalcare.14Onlinepatientgroupswererated

moreusefulthanhealthprofessionalsontenofthetwelveaspectsofcare,suchaspracticalknowledge

andhelpfindingotherresources,whereasspecialistsandprimarycaredoctorsreceivedhigherratings

fordiagnosisandmanagingacondition.

Itwasasmallsampleofasinglepatientgroup(just191respondents),butitservedastheinspirationfor

thefollowingseriesofquestions.Inournationaltelephonesurvey,alladultswereaskedwhichgroupis

morehelpfulwhentheyneedcertaintypesofinformationorsupport:healthprofessionalslikedoctors

andnursesorpeerslikefellowpatients,friends,andfamily.

Whoismorehelpfulwhenyou

need

Professionalsourceslikedoctorsand

nurses

Fellowpatients,

friends,andfamily

Bothequally

Timeswhenprofessionalsmattermost

Anaccuratemedicaldiagnosis 91% 5% 2%


85 9 3


63 24 5

Arecommendation

for

adoctor

orspecialist62 27 6


62 27 6

Timeswhennonprofessionalsmattermost


30 59 5

Aquickremedyforaneverydayhealthissue

41 51 4

Timeswhenthetwogroupsareequallyhelpful


43 46 6

Source:Pew

Research

Centers

Internet

&

American

Life

Project,

August

9

September13,2010Survey.N=3001adultsandthemarginoferroris+/ 3percentagepointsforthefullsample.

14EPatientsPrefereGroupstoDoctorsfor10of12AspectsofHealthCarebyTomFerguson,MD(TheFerguson

Report:March1999).Availableat:http://www.fergusonreport.com/articles/fr039905.htm


14/26


Accuratemedicaldiagnosis

Healthprofessionalsaretheoverhwhelmingfavoriteswhenitcomestogettinganaccuratemedical

diagnosis.Fully91%ofU.S.adultssaydoctorsandnursesaremorehelpfulthanothersources,suchas

fellowpatients,friends,andfamily,whentheyneedadiagnosis.Just5%ofadultssaytheyfindadvice

fromfriends,family,andothersourcesmorehelpful.

Peoplelivingwithrareconditionsoftenstruggletogetadiagnosis.Infact,theNationalInstitutesof

HealthestablishedtheUndiagnosedDiseasesPrograminordertohelppatientswithrareconditionsfind

answers,withtheunderstandingthattheexplorationoftheedgesofmedicinecanprovideinsightsinto

morecommonailments.15Adiagnosis,however,isjustanotherstartingpointformostpeople,

especiallyiftheyfeelmoreinformationandadviceareneeded.

OnewomaninouronlinesurveyofNORDmembersdescribedhowherdoctorgaveherthreepages

copiedfrom

amedical

journal

about

her

condition

and

little

else.

She

went

home

and

found

an

online

supportgroupwhereshelearnedaboutthetestsshewouldsoonfaceaspartofthenextstageof

diagnosis.Unfortunately,sinceshewasthefirstpersonwiththisconditiontoeverbetreatedather

localhospital,shesaysshedidnotreceiveoptimalcare.Shewrote:ThebestpieceofinformationthatI

learnedfromotherpatientswastogettoaphysicianthattrulyknowshowtotreatmydisease. Ipass

thisalongtoalloftheotherpatientsthatIcomeincontactwith.Idon'twantanyoneelsetoreceivethe

wrongdosageasIdid.Otherpatientsareyourbestsourceofinformationwhendealingwitharare

disease.Theyarelivingitandknowexactlyhowyoufeel.


Healthprofessionals

are

the

clear

favorite

when

it

comes

to

gathering

information

about

prescription

drugs.Fully85%ofadultssaytheythinkdoctorsandnursesaremorehelpfulthanpeersourceswhen

theyneeddrugrecommendations.

ArecentstudybythePewInternetProjectandtheCaliforniaHealthCareFoundationreportedthat24%

ofinternetuserslookonlineforinformationaboutdrugsafetyorrecalls.16Caregivers,women,college

graduates,andinternetuserslivingwithchronicconditions(particularlythosewithlungconditions)lead

allothergroupsintheirinterestindrugsafetyinformation.Ageisalsoasignificantpredictor:29%of

GenerationXinternetusers(3445)saytheyhavedonethistypeofresearchonline,comparedwith21%

ofinternetusersages4655yearsold.

15MedicalDetectivesFindTheirFirstNewDisease,byGinaKolata(TheNewYorkTimes:February2,2011).

Availableat:http://www.nytimes.com/2011/02/03/health/03disease.html16

HealthTopics(2011).


15/26



Whenaskedwhotheythinkismorehelpfulwhentheyneedinformationaboutalternativetreatments,

63%ofadultschoosehealthprofessionalsoverothersources.Twentyfourpercentofadultssaythey

findtheadviceoffriends,family,andfellowpatientsmorehelpfulinthiscase.

A2008studybythePewInternetProjectandCaliforniaHealthCareFoundationfoundthat35%of

internetusershavelookedonlineforinformationaboutalternativetreatments.17Womenare

significantlymorelikelythanmentolookonlineforalternativetreatmentsandmedicines(37%,

comparedwith31%).Inaddition,adultsovertheageof65aresignificantlylesslikelythanyounger

adultstolookupalternativetreatmentsandmedicinesonline.

Arecommendationforadoctororspecialist

Sixtytwopercentofadultssaytheythinkhealthprofessionalsaremorehelpfulthanpeersourceswhen

itcomestogettingarecommendationforadoctororspecialist.Twentysevenpercentofadultsprefer

toask

friends,

family,

and

fellow

patients

for

this

type

of

advice.

Olderadultsaremuchmorelikelythanyoungeronestosayhealthprofessionalsopinionsaremore

helpful:72%ofadultsages65andoldersaythis,comparedwith56%of1829yearolds,forexample.

Inourpreviousreportaboutthehealthtopicspeoplesearchforonline,wefoundthat44%ofinternet

userslookonlineforinformationaboutdoctorsorotherhealthprofessionals.18Caregivers,women,

thosewithacollegedegree,andparentswithchildrenlivingathomeleadallothergroupsinlooking

onlineforinformationaboutdoctorsorotherhealthprofessionals.Halfofinternetusersineachof

thesegroupslookonlineforthistypeofhealthinformation.

GenerationXinternet

users

(ages

34

45)

are

the

most

likely

age

group

to

look

online

for

information

abouthealthprofessionals:51%,comparedwith41%ofinternetusersintheir20sand42%ofinternet

usersbetween5664yearsold,forexample.


Healthprofessionalsarealsopreferredbyamajorityofadults(62%)whenitcomestogettinga

recommendationforahospitalorothermedicalfacility.Twentysevenpercentofadultssaytheythink

othersources,suchasfriends,family,andfellowpatients,aremorehelpfulingatheringthistypeof

information.

Again,older

adults

are

considerably

more

likely

than

younger

adults

to

turn

to

health

professionals

for

thistypeofinformation:72%ofadultsages65andolder,comparedwith54%of1829yearolds.

17TheSocialLifeofHealthInformation(2009)



16/26


Inourpreviousreportaboutthehealthtopicspeoplestudyonline,wefoundthat36%ofinternetusers

lookonlineforinformationabouthospitalsorothermedicalfacilities.19

Caregivers,women,thosewitha

collegedegree,thosebetween3445yearsold,andparentswithchildrenlivingathomeleadallother

groupsinlookingonlineforinformationaboutthistopic.Fourinteninternetusersineachofthese

groupslookonlineforinformationabouthospitalsorothermedicalfacilities.


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).

Aquick

remedy

for

an

everyday

health

issue

Halfofadults(51%)saytheyfindfriends,family,andfellowpatientsmorehelpfulthanprofessional

sourceswhentheyneedaquickremedyforaneverydayhealthissue.Fortyonepercentpreferadvice

fromadoctorornurse.

Thegenderandagebreakdownsaresimilartothequestionregardingpracticaladviceforcopingwith

daytodayhealthsituations:womenandyoungeradultsprefertogatherquickremediesfrompeers

whilemenandolderadultspreferprofessionals.

Onerespondentcommented,Whentimeisoftheessence,searchontheinternetistheonlywayto

timetravel.


Peoplearesplitevenlywhenitcomestodaytodaycaretips:43%ofadultssayhealthprofessionalsare

morehelpfuland46%ofadultssayfriends,family,andfellowpatientsarethebettersource.



17/26


Womenaremorelikelythanmentorelyonfriends,family,andfellowpatientsforpracticaladvice:51%,

comparedwith40%.

Olderadultsaresignificantlymorelikelytosayhealthprofessionalsarethemorehelpfulsourcefor

copingstrategies:55%ofadultsages65andolder,comparedwith45%of5064yearolds,40%of3049

yearolds,

and

38%

of

18

29

year

olds.

Onemothercaringforachildwitharareconditionwrote,Inmyexperienceofdealingwitharare,

serious,andchronicdisorder,specialistdoctorsaretypicallythegotopeopleformedicaladvice

involvingmedicationorsurgerySometimesthedoctorshavenotbeenasknowledgeableaboutthe

feedingissueswhichareofgreatimportance.Sometimesotherparentshavesomereallygoodadvicein

theseareas.Shequalifiesthatstatement,however,notingtheseriousnessofthesituationsheand

otherpeopleface:Wepatientsandcaregiversofpatientshavetobeverycarefulnottogeneralize

fromourexperiences.Sharinginformationaboutexperienceswithmedicationsandsymptomisvery

helpfulaslongasextrapolationsarenotmade.


18/26


Methodology

NationalTelephoneSurvey:Methodology

AllnumericalresultsinthisreportarebasedondatafromtelephoneinterviewsconductedbyPrincetonSurvey

ResearchAssociates

International

between

August

9and

September

13,

2010,

among

asample

of

3,001

adults,

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,

but

telephone

numbers

are

drawn

disproportionately

from

telephone

exchanges

with

higher

thanaveragedensityofAfricanAmericanand/orHispanichouseholds.Thecellularsamplewasnotlistassisted,

butwasdrawnthroughasystematicsamplingfromdedicatedwireless100blocksandsharedservice100blocks

withnodirectorylistedlandlinenumbers.

Newsamplewasreleaseddailyandwaskeptinthefieldforatleastfivedays.Thesamplewasreleasedin

replicates,whicharerepresentativesubsamplesofthelargerpopulation.Thisensuresthatcompletecall

procedureswerefollowedfortheentiresample. Atleast7attemptsweremadetocompleteaninterviewata

sampledtelephonenumber.Thecallswerestaggeredovertimesofdayanddaysoftheweektomaximizethe

chancesofmakingcontactwithapotentialrespondent.Eachnumberreceivedatleastonedaytimecallinan

attempttofindsomeoneavailable.Forthelandlinesample,halfofthetimeinterviewersfirstaskedtospeakwith

theyoungestadultmalecurrentlyathome.Ifnomalewasathomeatthetimeofthecall,interviewersaskedto

speakwiththeyoungestadultfemale.Fortheotherhalfofthecontactsinterviewersfirstaskedtospeakwiththe

youngestadult

female

currently

at

home.

If

no

female

was

available,

interviewers

asked

to

speak

with

the

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.


19/26


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


20/26


116 42 Breakoff

2,001 1,000 Completes

94.5% 96.0% CompletionRate

13.6% 17.0% ResponseRate

Thedispositionreportsallofthesampledtelephonenumberseverdialedfromtheoriginaltelephonenumber

samples.Theresponserateestimatesthefractionofalleligiblerespondentsinthesamplethatwereultimately

interviewed.AtPSRAIitiscalculatedbytakingtheproductofthreecomponentrates:

o Contactratetheproportionofworkingnumberswherearequestforinterviewwasmadeo Cooperationratetheproportionofcontactednumberswhereaconsentforinterviewwasatleast

initiallyobtained,

versus

those

refused

o CompletionratetheproportionofinitiallycooperatingandeligibleinterviewsthatwerecompletedThustheresponserateforthelandlinesamplewas13.6percent.Theresponserateforthecellularsamplewas

17.0percent.


21/26


NationalTelephoneSurvey:Questions

Q6ab Doyouusetheinternet,atleastoccasionally?Doyousendorreceiveemail,atleastoccasionally?

CURRENT

% 74 Yes

26 No

*

Dontknow

* Refused

Q17 Areyounowlivingwithanyofthefollowinghealthproblemsorconditions?

YES NO

DONT

KNOW REFUSED

a. DiabetesorsugardiabetesCurrent 11 89 * *

b. HighbloodpressureCurrent 24 75 1 *

c. Asthma,bronchitis,emphysema,orotherlungconditions

Current 12 88 * *

d. Heartdisease,heartfailureorheartattackCurrent 6 94 * *

e. CancerCurrent 2 97 * *

f. AnyotherchronichealthproblemorconditionIhaventalreadymentioned

Current 17 82 * 1

Q18 Inthelast12months,haveyoupersonallyfacedaseriousmedicalemergencyorcrisis?

CURRENT

% 12 Yes

88 No

* Dontknow

* Refused

Q20 IsthereanyoneclosetoyouwhohasaCHRONICmedicalcondition,suchasasthma,diabetes,heartdisease,high

bloodpressure,cancer,oranotherchroniccondition?

CURRENT DE C200820

% 47 Yes 49

53 No 50

* Dontknow *

* Refused 1

Q21 Inthelast12months,hasanyoneclosetoyoufacedaseriousmedicalemergencyorcrisis?

CURRENT

% 27 Yes

72 No

* Dontknow

*

Refused

20InDecember2008,questionwordingwasIsthereanyoneclosetoyouwhohasaCHRONICmedicalcondition,

suchasasthma,diabetes,heartdisease,highbloodpressure,orcancer?


22/26


Q24 Apartfromlookingforinformationonline,therearemanydifferentactivitiesrelatedtohealthandmedicalissuesa

personmightdoontheinternet. Imgoingtoreadalistofonlinehealthrelatedactivitiesyoumayormaynothave

done. Haveyou

YES NO DONT KNOW REFUSED

d.Goneonlinetofindotherswhomighthavehealth

concernssimilartoyours

Currentinternet

users

18

82

0

*

Q30 ThinkingabouttheLASTtimeyouhadahealthissue,didyougetinformation,careorsupportfrom[INSERT;

RANDOMIZE]?[IFYESANDINTERNETUSER:DidyouinteractwiththemONLINEthroughtheinternetoremail,

OFFLINEbyvisitingtheminpersonortalkingonthephone,orBOTHonlineandoffline?]YES,

ONLINE

YES,

OFFLINE YES, BOTH

NO, NO TA

SOURCE

DONT

KNOW REFUSED

a. Adoctororotherhealthcareprofessional 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,

OR

other

sources,

such

as

fellow

patients,

friends

and

family?

And

who

is

more

helpful

when

you

need

[INSERTNEXTITEM;RANDOMIZE]? READASNECESSARY:Professionalsourceslikedoctorsandnurses,ORother

sources,suchasfellowpatients,friendsandfamily?PR O

FESSIONALS

OTHER

SOURCES

(VOL.) BOTH

EQUALLY DONT KNOW REFUSED

a. Anaccuratemedicaldiagnosis 91 5 2 2 *b. Emotionalsupportindealingwitha

healthissue 30 59 5 4 2

c. Practicaladviceforcopingwithdaytodayhealthsituations 43 46 6 3 1

d. Informationaboutalternativetreatments 63 24 5 6 1

e. Informationaboutprescriptiondrugs 85 9 3 3 1f. Aquickremedyforaneverydayhealth

issue

41

51

4

3

1

g. Arecommendationforadoctororspecialist 62 27 6 4 1

h. Arecommendationforahospitalorothermedicalfacility 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


23/26


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,emotional

or

behavioral

problems,

or

developmental

problems,

including

mental

retardation.

CURRENT

% 5 Yes

94 No

* Dontknow

* Refused

OnlineSurvey:Methodology

ThePewInternetProjectadaptedquestionsfromournationaltelephonesurvey,inconsultationwith

PrincetonSurvey

Research

Associates

International

(PSRAI)

and

the

National

Organization

for

Rare

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


24/26


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


25/26


Ifyouwouldlike,pleasegiveussomeinformationaboutyoursearchfortreatments.Hasitbeenprettyeasyorprettydifficult?

Andhowaboutthetreatmentsthemselves?Howaretheygoing?Didyourcarenetworkplayaroleinfindingthetreatmentsor

helpingadministerthem?[OPENEND]

CURRENT

% 69 Gaveresponse

31 Noanswer

6. Istherearesearchcenterorclinicianworkingonapossibletreatmentforthediseasethataffectsyouoryourloved

one?

CURRENT

% 61 Yes

16 No

23 Noanswer


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

YE S NO NO ANSWER

a. Consultedonlinerankingsorreviewsofdoctorsorotherproviders 42 38 20b. Consultedonlinerankingsorreviewsofhospitalsorothermedical

facilities 44 36 20

c. Consultedonlinereviewsofparticulardrugsormedicaltreatments 60 21 20d. Postedareviewonlineofadoctor 11 68 21e. Postedareviewonlineofahospital 7 72 21f. Postedyourexperienceswithaparticulardrugormedicaltreatment

online

20 59 21

Whatotherhealthrelatedonlineactivitiesdoyoufinduseful?Pleaseshareanythingthatcomestomind.[OPENEND]

CURRENT

% 37 Gaveresponse

63 Noanswer


26/26

9. Thinkingaboutthelasttimeyouhadahealthissue,didyougetinformation,careorsupportfromanyofthe

following?Ifso,pleasetellusifyouinteractedwiththemONLINEthroughtheinternetoremail,OFFLINEbyvisiting

theminpersonortalkingonthephone,orBOTHonlineandoffline.

YES,

ONLINE

YES,

OFFLINE YES, BOTH

NO, DIDNT

US ETHIS

SOURCE

NO

ANSWER

a. Adoctororotherhealthcareprofessional 4 39 26 10 22b. Friendsandfamily 5 20 33 18 25c. Otherswhohavethesamehealthcondition 23 8 23 22 24


CURRENT

% 15 Gaveresponse

85 Noanswer

10. Overall,whodoyouthinkismorehelpfulwhenyouneedeachofthefollowingkindsofinformationoradvicehealth

professionalslike

doctors

and

nurses,

OR

other

sources,

such

as

fellow

patients,

friends

and

family?

PROFESSIONAL

SOURCES AR E

MOREHELPFUL

OTHER

SOURCES AR E

MOREHELPFUL

BOTH

EQUALLY

HELPFUL

NO

ANSWER

a. Anaccuratemedicaldiagnosis 62 2 15 22b. Emotionalsupportindealingwithahealthissue 5 40 32 23c. Practicaladviceforcopingwithdaytodayhealth

situations 10 33 34 23

d. Informationaboutalternativetreatments 22 24 28 26e. Informationaboutprescriptiondrugs 44 7 26 23f. Aquickremedyforaneverydayhealthissue 19 25 31 25g. Arecommendationforadoctororspecialist 29 10 37 23h. Arecommendationforahospitalorothermedical

facility 29 10 38 24

Weareespeciallyinterestedinanystoriesyoucantellrelatedtothisquestion.Pleaseshareyourexperiencesandinsights.

[OPENEND]

CURRENT

% 24 Gaveresponse

76 Noanswer

pew p2phealthcare 2011

Documents