The Power of We · The PatientsLikeMe Experience Measuring the Value We Create Case Examples Where We’re Going . Proprietary & Conﬁden;al 3 The consumerizaon of healthcare

ThePowerofWeJune2016

Proprietary&Confiden;al 2

Tableofcontents

Consumers of Healthcare

The PatientsLikeMe Experience

Measuring the Value We Create

Case Examples

Where We’re Going


Theconsumeriza;onofhealthcare

•  Asconsumers,wehavebeguntoexperienceanunprecedentedlevelofpowerofchoiceandaregeHngusedtohighlevelsofcustomiza;on

•  Today,whenitcomestoproducts,services,andinforma;on,weexpectanddemandmore

•  Thoughit’sbeenslower,thesameconsumeriza;onisstar;ngtobeexpectedinhealthcare

•  Customerserviceandinforma;onsharingaremoreimportantthanever

•  Moreandmorepeoplehavebegunto“owntheirhealth,”askingques;onsinsteadofwai;ngtobetold

•  “Everypa;entshouldbetheCEOoftheirownhealth”

Everypersonisapa-ent;everypa-entisaconsumer


Thepa;ent-centriccall-to-ac;on

Allplayersinthehealtheconomywillneedarela%onshipwithengagedpa%entstodrivetheirbusinessesbutcurrentlyhavelimitedwaysofdoingso.Theindustrywillnotthriveifitcon;nuestouseafrac%onofthedataandknowledgethataconnectedcommunityofac;vatedandengagedpa;entscouldenable.

Pa;entsLikeMehascreatedauniquepa%entconsumerengagementpla7ormandbest-in-classpa%entknowledgeengineinthedigitalhealtheconomy.

Pa;entsuseourplaUormtoop%mizetheirhealthandengagewithourbrandbecausewecreatevaluealongtheirhealthjourney.Ourknowledgeengineenablesgreaterprecisionindeliveringpa%entcareandtheaccelera%onofnewtreatmentsandmedicines.

MassiveEmergingNeed

PLMPosi2onedforSuccess


Buildingacommunityofearlypa;entadopters

•  25+millionstructureddatapoints•  3+millionfree-textposts•  15+disease-specificoutcomescales

•  350,000+pa;ents•  2,500+condi;ons

•  65+peer-reviewedpapers•  Pa;ent-generatedtaxonomy•  SafetymonitoringplaUorm•  Endpointsinclinicaltrials

150K

200K

250K

300K

350K

400K

100K

50K

0K 2014 2013 2012 2011 2010 2009 2015 2006 2005 2008 2007

Pa;entsLikeMehasbeenbuildingongoingrela;onshipswithourmemberssince2006,whenwelaunchedourfirstcommunityforpa;entslivingwithALS.Sincethen,wehavescaledtheplaUormtosupportincreasingnumbersofpa;ents,diseases,anddata.

InsightsPa%ents + Data = Where we are today:

Num

bero

fPa;

entsLikeMepa;e

nts


Let’sstartwithonepa;ent,onestory

Thisisthepersonalstoryofoneofourpa;ents,“NapkinNotesDad,”whoislivingwith2differentcancers.Diagnosedwhilebeingthesoleproviderforhisfamily,hebeginsajourneythatwillchangehislife,andthelivesofmany,manymore.He’sherebecauseofthevaluehegetsbybeingamemberofourcommunity,butalsobecauseoftheopportunitytobepartofsomethingbigger.

ViewGarth’svideobyclickinghere


Whatwe’velearnedfrompartneringwithpa;entslikeGarth

ü  Opennessisreal,andagoodthingo  Earlypa;entadopterslikeGarthwanttoshare.They’redoingitfortheirownbenefit

andforthegreatergood.

ü  Listeningiseasierthaneverbeforeo  Gobeyondindividualpa;entstoriesandyou’llfindwholecommuni;es

willingtoengageandshare(e.g.,IPFandepilepsyinthispresenta;on).PeoplearecomingbacktoPa;entsLikeMeregularlyandenteringdataabouttheirhealthjourneyatunprecedentedrates.

ü  Dataisforgoodo  We’velearnedhowtobridgetheconsumerandscien;ficworldsinaway

thatgeneratesmeaningfuldataformedicinedevelopmentandcaredeliveryü  There’spoten%alforsomuchmore

o  Today,Pa;entsLikeMerepresentsthepoten;alimpactonasmallscale.We’reconstantlypressure-tes;ngandevalua;ngtheopportunityforourapproachtoeffectchangemorebroadly.


Howwecreateanddelivervaluetopa;entsandpartners

Pa%entEngagement

Ourpa;entsderivevaluefromengagingindata-drivenhealthwitha

posi%veuserexperience

Pa%entValuePLMdrivesthepa%entperspec%vebackintothehealthcaresystem

atscale

CommunityBuild

PLMrecruitspa%entstothecommunity

PartnerValue

Weprovidepartnerswithinsightsabout

pa;entstohelpthemcreatebegerproducts,

services&care

DataDona%onOurpa;entsdonate%me,data,andinsightsthathelppa;entsatscale

•  Strongbrandpresence•  Direct-to-consumermarke;ng•  Pa;entword-of-mouth

Howwerecruit

•  Insightstohelpthemnavigatetoop;malhealth

•  Connec;onswithotherpa;ents

•  PLM-ini;atedengagement(e.g.,pa;entnewslegers)

Howweengage

•  Pa;entsreadytodonatedata,responsivetoPLMcampaigns

•  Depthofphenotypicdataandpa;ent-reportedoutcomes

•  Pa;entsac;veintrialdesign

Howwescale

•  Improvedclinicaltrialexperience•  Developmentofbegercareop;ons•  Improvedpoint-of-careexperiences•  Improvedmonitoringoftreatmenteffects

Howwehelppa%entsbeyondPLM

•  More‘right’pa;entstakingpartinclinicaltrials

•  Sharperresolu;onofwheremedicinesaddvalue

•  Begermedicinevalueasdefinedbythepa;ents

Howwehelppartners


Crea;ngvaluebeyondthewebsite–theend-to-endmemberexperienceGiventheincreaseinconnectednessandconsumerempowerment,weneedtothinkabouttheend-to-enduserexperience.PLMoverlaysitsscien;ficarchitecturewithaconsumer-centricengagementapproachtoputpa;entsfirst.

Designingpa;ent-centeredresearcho  WeusecustomerjourneymappingatPa;entsLikeMe(andwithourpartners)tounderstandpa;ent

experiencesandmakebegerdecisions

Memberloyaltyprogramso  Tocompeteintoday’scustomer-firstenvironment,we’vedesignedahostofloyaltyprogramsto

iden;fyandengagepa;ents,encouragedatadona;on,shaperesearch,andu;lizethepa;entperspec;ve

Simplifiedandcustomizedcommunica;onso  Meetpa;entswherethey’reatwithevolving‘right;me,rightway’communica;oncampaigns;

relevanttoapointin;meduringtheirhealthjourneyandexpressedinterests

Don’tjustask…giveo  Wehaveaconstantcontentenginethatfocusesongive-backs–i.e.,early‘results’amereverystudy,

pa;entvideos,interest-relatedcontent,open-accesspublica;ons





Case Examples

Where We’re Going


GETBETTER LIVEBETTER KNOWI’MNOTALONE MAKEITCOUNT

•  Gettherightdiagnosis•  Choosebesttreatment

&knowitworks•  SeetherighttypeofMD•  Getmostoutofmycare

•  Maximizehealth•  Minimizeimpactofdisease

andcareonwork,health,finance,rela;onships

•  Connectwithotherslikeme •  Helpsomeoneelserightnow

•  KnowI’mcontribu;ngtoagreatergood

★☆☆☆☆•  Needmoredata•  Needtobecomemore

ac;on-focused

★☆☆☆☆•  Needmoredata•  Needtobecomemoreac;on-

focused

★★★★☆•  Coulddomoreproac;vematch-

making•  Biggestvaluenow

★★★☆☆•  Needtoemphasizestudies

&trials•  Needmorevisiblepartners

★★★★★•  Especiallyre:mywhole

health•  But:invisiblecondi;ons=

lessmo;vated;areaisverycompe;;ve

★★☆☆☆•  Ac;onablepa;entdataisrare•  Generalinfo&lifestyle

managementarenotunique

★★☆☆☆•  Matchmakingwouldbeunique•  Goodsocial/communityisa

must-haveforengagement

★★☆☆☆•  Our“whitehat”persuades

pa;entstoshare•  Nonprofitscompete

(successfully)forthewhitehat

Weknowwhatconsumervalueis–andpeopletellustheyfinditwhentheyexperiencethePa;entsLikeMeplaUorm

“Thechartsareworthwhile,notonlytotrackyourowndiseasebutsothatotherscanlookatthemandlearnsomethingtoo.

-PLMmemberwithMS

“…Thisisbyfarthebestforumandsiteforpeopletogetinforma-onandsupport.Ididtonsofresearch…Butnoothersitecouldcompare…InevertrustedanythingIreadelsewhereunlessIcouldfinditheretoo.

-PLMmemberwithMS

“Thechartsaregreat!IcanusethemtoseeifmypainlevelsarebeCerorworse.ThenIcantakethemtomyDoctoseeifIneedtoadjustmymedica2on….”

-PLMmemberwithAnkylosingSpondyli;s

“Ihave2Afghanistandeploymentsundermybelt…mildTBIand…severePTSD…Sincetellingmystoryinaforum…andreadingallofyourstories,I’vemadetremendousprogresswithinmyself. I'veonlyhadmaybe5“freakouts”sincejoining.WhereasIwashavingfiveadaybefore.

…Ifithadn'thavebeenforallofyou,brothersandsisters,Iwasontheedgeofsuicide.Youhelpedmethrough.”

-PLMmemberwithPTSD

Basedonsystema;cethnographieswithPLMmembersandnon-members,aswellasyearsoflisteninginourforums.


Wemappa;ents’individualwantsandneedsintothreebroadvaluecategoriesandletpa;entschoosetheirpath

•  Documentsymptomchanges,treatmentsstartsandstops,triggersofexacerba;ons,etc.

•  Generatereal-worldoutcomesdataforusebyresearchers

Learnaboutlivingwith&trea;nglife-changingcondi;ons

•  Answertheques;ons,“Isthisnormal?”and“Whataremychoices?”

•  Learnfromaggregatedpa;enttreatmentandsymptomdata

Connectwithotherssharingthoseexperiences

•  Findpa;entstoconnectwithbasedonage,gender,disease,treatment,symptoms,interests

•  Getday-to-daysupportfromotherstolivebeger,together

Tracktheirhistoryandprogressover;me


Thepa;entexperiencewecreateisdis;nc;vePa;entsareagractedtojoin,andreturnto,Pa;entsLikeMebecause:

ü  We’redata-drivenbutconsumer-focused–“Wehavetogivepa;entstheabilitytochangethesystem…par;cipa;oniswhatmagers.”–JamieHeywood,Pa-entsLikeMeco-founder

ü  Wetranslatemedical/scien;ficjargonintoconsumer-friendlycommunica;onsü  We’recapturinglongitudinaldata(notjustsnapshotsofapa;ent’sjourney)ü  Weanswerques;onsthatpa;entscareabout

Whatmighthelpmegetbeger?

Whatmighthelpmelivewithit?

WhatisthisthingIhave?

Whatwillthis(Dx,Tx,Sx)dotome?

HowdoIdealwithproblemscausedbymycondi;on?

AmIcrazy/alone?


“IhavetakenAd

derallsince2010

totreatMul;pleS

clerosis.Ithas

allowedmetocon

;nuetoworkaf

ull;mejobmanagingamul;

million-dollarproje

ctandkeepupw

iththreesmallchildr

enwithouta

distrac;ngbrain

fog.

Suddenl

yconsideringthi

sdrugexperimentalsee

msbizarre.AsIloo

k

atpa;entslikeme.com,itappe

arsIamnotalon

etakingadderal

lXRfor

symptomsresul;ngfromMS.There

isamorethansta;s;c

ally

significantrateo

fsuccessforMSpa;en

tsusingittotrea

tfa;gue,

cogni;veimpairmentand

brainfog.Thisw

ebpagecontain

sthe

resultsof318MSpa;en

tstakingit.hgps

://www.pa;ents

likeme.com/

treatments/show/3597#

overview

Pleasere

considerthisdes

igna;onandlet

meknowsoIcanfi

llthe

prescrip;on.”

Thispa;entfoundunparalleledvalueinPLM’streatmentreports,whicharerichwithreal-worldpa;entreporteddataonsideeffects,dosing,purpose,andmore.HesentthePa;entsLikeMetreatmentreporttohisinsurancecompanyamerpriorauthoriza;onwasdenieddueadrugbeingconsidered“experimental”.Theinsurancecompanyreversedtheirdenialandauthorizedthetreatment.

Weseehowthedataandwordsthatpa;entssharecanhelpchangeothers’lives





Case Examples

Where We’re Going


57%

22%

Pa;entsuseourcommunityforimpacUuldecisionsandderivebegeroutcomesasaresult

“Understandingsideeffectsoftreatments”

37% “Mydecisiontostartamedica;on”

41% HIVpa;entsreducedriskybehaviors

21% Fibromyalgiapa;entschangedtheirphysician

Mooddisorderpa;entsneededlessinpa-entcare

27% “Mydecisiontochangeamedica;on”

Pa%entsLikeMewasmoderately/veryhelpfulin:

AsaresultofusingPa%entsLikeMe:

Note:Resultsfromastudyusingacross-sec;onalonlinesurveyfromsixPLMcommuni;es:ALS,MS,PD,HIV,fibromyalgia,andmooddisorders.N=1,323(19%ofinvitedrespondents).Source:“SharingHealthDataforBegerOutcomesonPa;entsLikeMe,”Wicks,Paul,PhD,et.al.JMIRPublica;ons.14June2010.


*Twigerfiguresbasedonthosewhos;lluseapps60dayslater(QuegrastudypublishedApril2015,asreportedbyCNBC).Notshown:Facebook(with~49/50userss;llac;veat14%revenuespentinmarke;ng)asitisnotconsideredacomparableusecase.LinkedInfigurebasedon%ac;veusers(logonatleastonceamonth)asofQ32014,asreportedinquarterlyearningscall.Fitbitreten;onfigurefromRockHealthanalysis,forchangeinpaidac;veusersforfirst9moin2014(averagetenure4.5months).PLMfiguresbasedonM2engaged(thosewhologgedinduring2ndmonthamersign-up)forthosewhosignedupduringbetweenQ22014andQ12015(weightedby2014condi;onmixtoadjustforanyclient-drivenrecruitmenteffortsthatmaydispropor;onatelypullinsomecondi;ons).PLMfocuscommuni;esincludeALS,PD,MS,IPF,Epilepsy,andMood(BipolarandMajorDepressivedisorders).

totalpopula;on targetcondi;onstwiger

Forevery50peoplewhosignup,numberofmemberss%llac%vetwomonthslater*

Ourmemberreten;onissimilartootherfamiliaronlineconsumerengagementplaUorms


TenureQuarter

Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q100

10

20

30

40

50

60

70

80

90

100

110

120

130

140

150

Life;m

eDa

taPointsp

erUser

118.1

108.9

TargetCondi%ons*70.9

125.7

97.8

50.3

132.6

47.0

145.0

TotalPopula%on35.2

52.7

85.0

43.754.6

58.7

40.0

139.2

56.6

Note:Targetcondi;onsincludeALS,PD,MS,IPF,Epilepsy,andMood(Bipolar,GeneralizedAnxiety,andMajorDepressivedisorders).Theaverageiscalculatedbasedonthetotalnumberofdatapointseachuserhasenteredattheendoftheirtenure-quarter.Generalpopula;ondoesnotincludememberswhohavenocondi;onlisted.

2012Pa%entCohortCumula%veDataPointsDonatedbyQuarter

TenureQuarter

Pa;entswhostayengagedcon;nuetoac;velydonatedataover;me,par;cularlyintargetcondi;ons


Note:Datapointsonlyincludethosewithcondi-onlisted.Averagedatapointsperuserbasedon#totaldatapointsdonated/cohortsizeinagivenquarter.Increasemaybeunderstatedasitdoesnotaccountfornaturaldeclinethatwouldoccurbetweenquarters

0

5,000

10,000

15,000

20,000

25,000

Q32014 Q42014

24DaysofGivingCampaignPLM-ledsite-widedatadona;oncampaign

Spurred30%increaseindatadona;onfromcohortof9,000pa;entswhojoinedbackin2012

0

200

400

600

800

1,000

1,200

1,400

Q42013 Q12014

Parkinson’sVoiceAnalysisPartnerprojecttoassessvoicerecordingstomeasurediseaseprogression

Spurred59%increaseindatadona;onfromcohortof177pa;entswhojoinedbackin2012

+30%+59%

TotalD

ataPo

intsDon

ated

TotalD

ataPo

intsDon

ated

Weuseengagementcampaignsthatareeffec;veatreac;va;ngusersandincreasingdatadona;ons


CampaignshelpusgaugereachbeyondourcommunityIn2014,PLMlaunchedaconsumercampaigncalledDataforGoodtoi)raiseawarenessofPa;entsLikeMewithpoten;alnewmembersandii)increaseengagementanddatadona;onfromcurrentmembers.Aspartofthecampaign,welauncheda“24DaysofGiving”ini;a;veinDecember2014focusedonencouragingpeople–bothhealthyandsick–tosharetheirdata.Herearesomeofthoseresults:

ü  Nearly69millionimpressionsachieved;securedcoverageinleadingoutletsthatguideonlinenewstrends–includingTIMEandUSNewsandWorldReport

ü  149Tweets,yieldingnearly900,000impressions

ü  Outbrainhelpedamplifymediahits,garnering8millionimpressionsandnearly5,000clicksontopoutletssuchasParen;ng.com,CNN.comandHealth.com

ü  On“GivingTuesday,”Garth(onslide6)did33mediainterviewsresul;ngin35TVairings,13webairings,1,054radioairings...reachingatotalaudienceof14million

ü  Forcurrentmembers,wehad36%morepeoplecompletetheirprofileandcontribute47%moretreatmentevalua%onsthanaverage


Andthisisjustthebeginning

ü  Con;nuetocustomizetheend-to-enduserexperience(beyondPa;entsLikeMe)tohelpdrivevalueforpa;entsinthebroaderhealthcareecosystem

ü  Evolveourconsumer-engagementapproachtotrulymeetpa;entswherethey’reatbyservingupcontentandcalls-to-ac;oninacustomizedandpersonalway(e.g.,usebehavior-triggeredemailsordevelopingasmarterinterview-styleques;oninterfacewithintheseintegratedpa;entjourneys)

ü  Strategicallypartnerwithotherorganiza;onstomovetowardsmoresophis;catedconsumer-centricandscien;fically-validstudyexperiences(e.g.,virtualclinicaltrials)

We’vebeenac;velylearningaboutpa;entsandenhancingourengagementtechniquesforthepastdecade.Thiswasnecessaryfounda;onalworktohelpusunderstandthepa;entjourneyanddesignawaytoeffectchangemorebroadly.What’snext?





Case Examples

Where We’re Going


CaseExampleI:Theevolu;onofanepilepsycommunity

Pa;entsLikeMeandUCBlaunchedacustomizedcommunityexperienceforpeoplelivingwithepilepsyin2010

ü  Withinthefirstyear,thecommunityhadadedicatedforum,customizedcommunica;onsanddisease-specifictrackingtools(e.g.,a“seizuremeter”)

ü  We’vecon;nuouslyevolvedouroverallengagementtechniques,andstudy-specificapproachesbasedonthecommunity’sneeds

ü  Today,therearenearly10,000pa;entswithepilepsyregisteredinthecommunity 0

2,000

4,000

6,000

8,000

10,000

12,000

2010 2011 2012 2013 2014 2015

PatientsLikeMe Epilepsy Community

(Projected)


Quan;fyingtheimpactofpuHngpa;entsfirst

ü  59%-gainedabegerunderstandingoftheirseizures

ü  23%-hadfewervisitstotheemergencydepartment

ü  49%-recordingseizureshelpedthembegermanagetheircondi;on

ü  28%-Pa;entsLikeMegavethemmoreandbekercontrolovertheircondi%on

ü  30%-Pa;entsLikeMehelpedthembemoretxadherent

ü  21%-insistedonseeinganepilepsyspecialist

BeforejoiningPa%entsLikeMe,1in3pa%entshadnooneintherealworldwithwhomtodiscusstheirepilepsy.AmerjoiningPa;entsLikeMe,2in3pa%entsreportedaconnec;ontoatleastoneotherperson.

Oneofourfirststudieswiththeepilepsycommunitywasconductedin2011.Theresults,laterpublishedinEpilepsy&BehaviorandpresentedatAAN,revealedthatmembersdemonstratedsignificantperceivedbenefitsincludingimprovedseizureknowledge,medica;onadherenceandreducedERvisits,butalsounderscoredsignificantneedthatPLMusedtobekerservepa%ents.


Studyingtheimpactofthecommunityonoutcomes

ProvenintheVeteranPopula%on

Conclusion: An internet-based psychosocial intervention was feasible to implement in the US veteran population and increased epilepsy self-management and self-efficacy scores. The greatest improvement was noted for information management behaviors. Patients with chronic conditions are increasingly encouraged to self-manage their condition, and digital communities have potential advantages, such as convenience, scalability to large populations, and building a community support network.

FromPLM’sAANNeurologyPublica%on:

Neurology – 10.1212/WNL. 0000000000001728 Patients optimizing epilepsy management via an online communityPatients

Hixon, J, Barnes, D, Parko, K, Durgin, T, Van Bebber, S, Graham, A, Wicks, P

Shortlyamerourstudytounderstandtheini;alcommunity’svaluetopeoplelivingwithepilepsy,Pa;entsLikeMestartedanewprojectwiththeVA’sEpilepsyCentersofExcellencetounderstandPa;entsLikeMe’simpactonpa;entoutcomes.ThisstudywascalledthePolicyonOp;malEpilepsyManagement(orPOEM)study.Withthisproject,Pa;entsLikeMecouldtesthowtocreateamemberjourneythatwouldi)engageasubsetoftheepilepsypopula;on(militaryveterans),ii)learnhowtoengagecon;nuouslyinalongitudinalstudy,andiii)createafeedbackloopsopar;cipantsandthebroadercommunitygetsomethingbackalongtheway.TheresultsofthePOEMstudywererecentlypublishedinNeurology.


Acommunity,anexperience,alife-changerforpa;entslikeLe;;a

ViewLe;;a’svideobyclickinghere

“Pa;entsLikeMechangedmylifebecauseitgavemealotoftheanswersIhadbeensearchingfor.Iwasabletotrackmysymptoms,treatments,triggers,andinteractwithotherpeoplewhoweresufferingwithepilepsy.Ul;matelyitwasonPLMwhereIdiscoveredwhatanepileptologistwas…andmyepileptologisttoldmeIwasaperfectcandidateforepilepsysurgery.Sincethesurgerylifehasbeenphenomenal.”

-  Le;;aBrowne-James

Le;;ajoinedthePa;entsLikeMeepilepsycommunityaboutthreeyearsago.Shehadherfirstseizurewhenshewassixmonthsold,andthennotagainun;lshewas10.Shewasdiagnosedwithepilepsyandtriedonemedica;on,thenanother.Soon,Pa;entsLikeMewouldbecomeherlifelineandstartheroffonanincrediblejourney.


CaseExampleII:Understandinglupuspa;ents’unmetneedsandtreatmentpagerns

Pa;entsLikeMerecentlyperformedresearchtounderstandtheu;lityofusingpa;ent-reporteddataandreal-worldexperiencessharedbypa;entsinouronlinesystemiclupuserythematosus(SLE)communityMethods

ü  WeanalyzedPLMpa;ent-reporteddataonSLEsymptoms,symptomseverity,treatment,sideeffects,perceivedefficacyandreasonsforstoppingtreatment

ü  Forcontextonpa;entexperience,weanalyzedfree-textsec;onsofthewebsite,suchasforumsandbiographies

ü  Toexplorefactorsrelatedtotreatmentadherence,wegeneratedKaplan-Meiercurvesoftreatmentdura;onforanypa;enttakingprednisone

ü  We’vediscussedwaystofeedbackthislearningdirectlytopa;ents


Lupusisahighlysymptoma;cdisease

Mostpa;entmemberswithSLEreportedmoderateorseverepain,fa;gue,brainfog,andinsomnia.Lessthan1/3rdexperiencedmoderateorseveremalarrash.Thesesymptomreportsarevisibletopa;entsonthewebsite.


Whatarelupuspa;entsdiscussing?

Aspartofourstudy,weanalyzedfreetextdiscussionsandfoundpa;entswroteaboutpainmorethananyothercomponentofSLE,includingflare-ups.


Whatcanwelearnabouttreatmentpersistence?

Togeneratecompellingresearchhypotheses,welookedatpa;ents’medica;onadherenceandvariouspa;ent-reporteddata(e.g.,sideeffects)


Where’sthevalue?

Ourwebsiteisdesignedtogivelupuspa;entscontextaroundtheirexperienceswithlupus.Chartslikethesehelppa;entsseehowtheycomparetoothers,whileourresearchersusethedatatodomoresophis;catedanalyses.Inastudylikethisone,weexaminehowtosharethesefindingsandfeedthembacktopa;entsinemailsorshortreportssothey’reconstantlylearningfromtheeachothers’data.


CaseExampleIII:Theidiopathicpulmonaryfibrosis(IPF)community

Epilepsy IPFAverageageatdiagnosis

19 66

Gender,male

46% 75%

Prevalence(US),pa;ents

5,100,000 128,100

Prognosis Canbecontrolledin~70%ofpa;entcases

Mediansurvivalof2-5years

Everypopula;onofpa;entsonPLMisdifferent,andwe’reconstantlylearninghowtocreatevalueforeachandeveryone.Inthiscaseexample,we’regoingtomovetoasubstan;allydifferentcondi;onthanepilepsy–IPF.Let’scompareandcontrastIPFwithepilepsyjusttoseehowdifferenttheyreallyare:


4,001

2,8862,546

2,2231,927

1,6001,222

642254

Buildingalarge,highlyengagedcommunity

Launch

Cumula%veIPFpa%entssinceNov2012

Source:DataasofMarch30,2015

Q4Q3Q2Q12014

Q4Q3Q2Q12013

March2015

ü  Pre-2012:Lessthan50IPFpa;entsonourplaUorm

ü  November2012:2monthsofethnographyanduserdesign

ü  December2012:4monthsoffeaturebuildbegins;userrecrui;ngstrategyiden;fied

ü  Feb2013:Largescaleuserrecrui;ngbegins

ü  September2013:PLMhasoneofthelargestonlineIPFcommuni;esintheworld;nearlyhalfourpopula;onisac;ve

ü  November2014:Twonewdruglaunches

ü  April2015:Discussionsunderwayforpre-compe;;veindustryconsor;um


Theonlinecommunity,nowthelargestintheworld,isprovidingdirectbenefittoIPFpa;ents

Largestcommunityof“researchready,”highly-engagedpa%ents…

…providingunsolicited,meaningfulfeedback

*Includesdeceasedpa;entsandinac;vemembers.

“...itwaslikesomeone

handedmeafortune-toactuallymeetanother

personwiththishorribledisease-Iguessitwastherealiza;onthatIamnotaloneinthis-Iknewthisbuttoactuallymeetanotherpa;entlikemehelpedmefeellessisolated...”

—PLMmemberwithIPF

IPFasofQ12015

TotalIPFpa;ents*4,000+ResearchreadyIPFpa;ents3,400+


Today’sIPFcommunityhascustom-designedfeatures,apa;entresearchagenda,andcustomizedcommunica;ons

Pa;entstrackingtheirprogressonline….

…andhavingrichdialogueswiththeirpa;entpeers

*Note:quoteeditedforreadabilitywhereindicatedby[squarebrackets]

“Verygrateful…[for]suchanEXTREMELYusefulcommunity.IurgeALLsufferersfrompar;cipa;ngandsharingtheirexperiences…2½yearsagowhenIwasfirstdiagnosed,Iwasdevastatedtolearn[that]thediseasewasterminal.Theconsultanttoldmetherewerenotreatmentsandthatthelifeexpectancywas2—5years!Mylatestcheckupshowedtherewasnotherewasnoworseningofthesitua;on,but…[I]wastoldtoexpectworsening.However,this;metheconsultantsaidtherearetreatmentsavailablewithoutgivingmeanymoreinforma;on.HesaidthatIwillnotberecommendedforitasyet…ItisveryhearteningtoknowthatthereareTWO,FDAapprovedmedica;onsnowavailable.Hopefullytheyarebeneficial.”

—IPFcommunitymembersharingonforum*


PLMisnowuniquelyposi;onedtodiscoverIPFinsightsForthefirst;me,twomedica;onswereapprovedbyFDAonthesamedayforararediseasethatpreviouslyhadnoavailabletreatments.Thesemedica;onshavethepoten;altomakeadifferenceinthelivesofIPFpa;ents,butwithchoicescomeques;ons.Asapa;ent,howdoIfigureoutwhichmedica;onisrightforme?Pa;entsLikeMehasaskedIPFpa;entstoreportontheirtreatmentexperiencesduringthisuniqueperiodofpost-launchmedica;onobserva;on.Theirdatawillhelppeoplegetanswersandmakechoicesusinginsightsfromthebestsourcepossible—otherpa;entslikethem.Our‘right;me,rightway’approachtomembercommunica;onsispowerfulandspursengagementthatprovidesreal-worldinsightsrelevanttobothpa;entsandresearchers.Amerthecampaignkickoff,engagementanddatadona;onincreasedsignificantly:

0 1000 2000 3000 4000

DataPointsDonated

Cam

paig

n la

unch


Real-worldtreatmentobserva;ons:earlyfindings

• AwarenesshigherforEsbriet(67%)thenOfev(44%) • 32%ofpa;entsnottakinganytreatmentbecausetheydidnotknowtreatmentswereavailable• 6%ofpa;entsdon’twanttotakeanydrugfortheirIPF

TreatmentAwareness

• Esbrietusersaremorelikelytosharedecisionwithphysician(47%)thanOfevusers(15%) • Slowingprogressionanddoctor’srecommenda;onmostimportantreasonsforstar;ngtreatment

DoctorDiscussion

• Pa;entsreportissueswithpa;entsupportservices,insurancecompanies,andtheVA • Somephysiciansares;lltellingpa;entsthattreatmentsarenotyetavailableordidnotmen;onthenew-to-markettreatmentsatall

AccessBarriers

• Real-worldsideeffectsvarygreatlyfromreportedratesintrials • Abouthalfofpa;entsonbothtreatmentsperceiveminimalimprovements/effec;veness

TreatmentExperience

• 66%ofEsbrietusersand73%ofOfevusersare“notatalllikely”todiscon;nuetheirtreatment • Fewpa;ents(64%Esbriet/86%Ofev)stoppedorreducedtheirdoseasaresultofsideeffects

TreatmentDiscon;nua;on


Afewpar;ngthoughtsfromBryan

BryanwasamemberofPLM’sIPFcommunitysince2013.HewasamemberofourinauguralTeamofAdvisors,wherehewasamongstasmallgroupofamazingpa;entswhohelpedgivefeedbackonourresearch.InAugust2014,Bryanpassedaway.Hismemoryandhisdataliveon.

ViewBryan’svideobyclickinghere

“IfoundthePa-entsLikeMewebsite,andthoughtwowthere’smoreinforma-onherethananywhereelse.Therewasdefinitelymoreinforma-onthanmyphysiciansweregivingme.ThedatatheycollectishelpingwithresearchandbeCerunderstandingwhatthediseasedoes,howitworks…Iamverywillingtosharemymedicaldata…[because]Igiveanswerstopeoplewhohavethediseasethatneedtolivewithit.”

-  BryanKincaid(inmemoriam)

ThePowerofWeJune2016