Adop%ngandAgingandDisabilityPerspec%vetoIden%fyNa%onalCompu%ngResearch

Priori%es:Implica%onsforLearningHealthSystemsandRecommenda%onsfromthePCASTReporton

Technology

MargaretL.Campbell,PhDCampbell&Associates

(Re%red,Na%onalIns%tuteonDisability,IndependentLiving,andRehabilita%onResearch,ACL/DHHS)

May9,2016

Presenta%onObjec%ves

•  Part1:CommunicateDr.Chris*neCassel’sslidesinthecontextoftherecentPCASTReporton“Independence,Technology,andConnec*oninOlderAge.”

•  Part2:Illustratetheintersec*onoftheaginganddisabilityexperienceandhighlightsharedneedsandopportuni*esfortechnologybasedinterven*onsandservices.

•  Part3:Describethekeypriori*esofservingolderadultsandpersonswithdisabili*es(i.e.,accessibility,usabilityandperson-centeredplanning),andtheirimplica*onsforthelearninghealthsystemsconceptandforshapinganinclusivecompu*ngresearchagendathatisresponsivetotheneedsofbothtargetpopula*ons.

PART1:ChrisCassel’sSlides&

Recommenda%onsfromthePCASTReport

Systems Engineering: Complexity and Personalization are Key to Good Geriatric Care

Christine Cassel, MD Planning Dean, Kaiser Permanente School of Medicine May 9, 2016

Americans Living Longer

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Characteristics of Aging Population

§ Heterogeneous § Multiple conditions § Multiple medications § Risks of hospitalization § Multiple providers

6

Goals of Systems Engineering

§ Coordination §  Avoiding gaps § Reduced duplication §  Avoiding errors §  Patient-centered

7

What We Need from Data and Analytics

§ Comprehensive patient-centered data § Complete interoperability and data fluidity § Community sources combined with health care

sources §  Patient and family access to information

technology

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PrimaryFocusAreasofthePCASTReport

•  KeyChangesOlderAmericansONenExperiencewithAging:

– HearingLoss– Lossofsocialengagementandconnec*vity– Cogni*veChange– PhysicalChange

PCASTTechnology-RelatedRecommenda%onstoAddressAgingChanges/Challenges

•  Cross-CuUng:1.   Integra%ngFederalAc%on--toiden*fytechnologiesvitaltoagingand

adviseonsector-widewaystoadvancetechnology(keyagencies:OSTP/NCST,NSF,HHS).

2.   EngagementandSocialConnec%vity–Establishana*onalplantoensureaccesstoInternetcommunica*ons,whichareessen*altohealth,socialengagement,andwell-being(HHS/ACL,NTIA,DOC,FCC)

3.   MonitoringTechnologyforFrailandVulnerableElders(NIST)4.   FederalInvestmentsinResearchtoSpurInnova%on--Support

Interdisciplinaryandtransla*onalresearchincludingrobo*cs,advancedmobilitytechnologies,communica*ontechnology,withspecialemphasisoncogni*vetraining,homemonitoring,andimprovingregulatoryandpaymentsystemsandhomeandproductdesign(NIH,HHSAgencyforHealthcareResearch&Quality,NSF,VHA,DOD,DARPA).

PART2:TheIntersec%onoftheAgingand

DisabilityExperience:SharedNeeds,Opportuni%esforTechnologyToolsandProducts

Intersec%onofAgingandDisabilitySta%s%cs

•  Aging:Aboutoneineveryseven,or14.1%,oftheU.S.popula*on,isanolderAmerican.1

•  Disability:TheAmericanCommunitySurvey(ACS)es*matesthatin2014nearly1in8persons,or12.6%oftheU.S.popula*on,hadadisability.2

•  Aging&Disability:OftheU.S.popula*onwithdisabili*esin2014,51.6%werepeopleofworkingage(18-64)and40.7%werepeople65andover.2

•  Aging&Disability:OfthesixACSdisabilityitems,ambulatorydifficultywasthemostfrequentlycited,withthepercentageincreasingwithagefrom5.2%for18-64yearoldsto23%ofpersons65andover.3

Aging“with”and“into”DisabilityDiagnosesandChronicCondi%ons

Aging“with”disabili%es–  Spinalcordinjury–  Trauma*cbrain

injury–  Neuromuscular

disease–  Mul*plesclerosis–  Developmental

disabili*es–  Post-polio

syndrome

Aging“into”disabili%es--Osteoarthri*s--COPD--Vasculardemen*a--Coronaryarterydisease--Osteoporosis--Diabetes(complica*ons)

limblossperipheralneuropathies

Aging&DisabilitySharedRisks&NeedsforTechnology

SharedHealthRisks:--Riskoffalls--Chronicpain--Riskforinfec*ons--Needforcaregiversupport--Cogni*veimpairment--Depression/withdrawal--Changesinvision/hearing--Mobilitylimita*onsSharedNeedsforTechnology--Accesstoaccessibleandusableassis*veandadvancedtechnologydevicesandsystemstosupportsharedgoals.

Aging&Disability:SharedGoalsandOpportuni%esforTechnology

•  PromoteHealthyaging•  Sustain/maximizefunc*onandindependence•  SupportCommunityLiving•  Facilitatesocialandproduc*veengagement

PART3:KeyPriori%esforServingforOlder

AdultsandPWD:Implica%onsfortheExpandingthe

ConceptofLHSandShapinganInclusiveCompu%ngResearchAgendaand

DeliveringonthePromiseofTechnologyforAllAmericans

KeyPriori%esforServingOlderAdults&PWD:Accessibility&Usability

•  Accessibility–referstoensuringanequivalentuserexperienceforpeoplewithdisabili*esofallages.Forexample,itmeansthatpeoplewithdisabili*escanperceive,understand,navigate,andinteractwithwebsitesandITtoolsandsystemsandpar*cipatewithoutbarriers(WorldWideWebConsor*um[W3C]).

•  Usability–referstodesigningproductstobeeffec1ve,efficient,andsa1sfying.Usabilityisanaspectofhuman-computerinterac*on(HCI)researchanddesign;andtheprac*ceofusabilityislargelyaboutfollowingauser-centereddesign(UCD)processtocreateposi*veuserexperiences(W3C).

KeyRequirementsforServingOlderAdults&PWD:Accessibility&Usability

•  Legisla%veandRegulatorySupportforAccessibility:–  TheAmericanswithDisabili*esAct(ADA)andSec*on508applyto

healthIT,althoughtheyarenotconsistentlyenforcedandhavenotbeentestedinthecourtsystem.

–  Sec*on1557oftheAffordableCareAct(ACA)prohibitsdiscrimina*onbasedondisability.

•  Implementa%onGuidelines:–  TheWorldWideWebConsor*um(W3C)offersfreeguidelinesand

toolsthatcanenhanceaccessibilityandinteroperability(hmps://www.w3.org/WAI/).

–  WebContentAccessibilityGuidelines(WCAG2.0)tomakethecontentofwebsitesaccessible(hmps://www.w3.org/WAI/intro/wcag).

KeyRequirementsforServingOlderAdults&PWD:Person-CenteredPlanning/Services

•  Defini%on:Aprocessthatisdirectedbythepersonandiden*fiesthestrengths,preferences,serviceandsupportneeds,anddesiredoutcomesoftheperson,consistentwiththeperson’shealth,culturalpreferences,housing,family,employment,andsocialsupportsneeds.5

•  Legisla%veandPolicySupport:–  AffordableCareAct(ACA)Sec*on2402(a):OversightandAssessmentofthe

Administra*onofHomeandCommunityBasedServices–  HHSSecretary’sGuidanceonImplementa*onofSec*on2402(a)oftheACA–  TheOfficeoftheNa*onalCoordinatorforHealthInforma*onTechnology(ONC)

issuedtheir2015-2020StrategicPlanandaNa*onalInteroperabilityRoadmapthatprovidesaframeworkforhealthITtoempowerindividuals,families,andcaregiversthroughimprovedhealthmanagementandengagement.(hmps://www.healthit.gov/sites/default/files/federal-healthIT-strategic-plan-2014.pdf).

Implica%onsofAging&DisabilityPriori%esforLearningHealthSystems

•  Broadenthedefini*onofLHSbeyondthehealthcaresystemto:–  Includethepa*ent,familyand/orcaregivingsystem;and–  Reflectbi-direc*onallearningandengagementbetweenprovidersandpa*ents.

•  ExpandthemodelofLHSbeyondthegoalof“changeinprac*ce”toinclude“improvedhealthandfunc*onoutcomes”forolderadultsandpeoplewithdisabili*es(PwD).

•  Adoptthepriori*esof“accessibilityandusability”fromdisabilityandthevaluesof“person-centeredplanning/services”fromaginganddisabilitytoensurethatLHSandtechnologiesareusablebyandreflec*veoftheneedsofbothtargetpopula*ons.

Implica%onsofAging&DisabilityPriori%esforanInclusiveCompu%ngResearchAgenda

•  Elevate“accessibilityandusability”asarecognizedna*onalpriorityforofallnewandemerginghealthinforma*onandotheradvancedtechnologiestoensurethatthesetoolsandsystemsareavailabletobenefitallAmericans.

•  Integraterequirementsforincorpora*onofaccessibilityandusabilitystandardsandguidelinesintoallfederalfundingini*a*ves.

•  Involvestakeholdersintheprocessofiden*fyingna*onalpriori*esfortechnologyR&Dtoensurethatperson-centeredprinciplesarefollowed.

•  Provideresearchers,developers,designers,andvendorswithresourcesandtrainingonaccessibilitystandardsandguidelines.

Implica%onsofAging&DisabilityPriori%esforthePCASTReportRecommenda%ons

•  ReducefederalsilosintechnologyR&Dpolicyandfundingini*a*vesbyexpandingthetargetpopula*ontoincludebotholderadultsandindividualsagingwithdisabili*es.

•  ExpandfederalinvolvementtoincludeNIDILRR,theU.S.AccessBoard,andotherdisabilityregulatoryandR&Dagencies.

•  Incorporate“accessibilityandusability”asapriorityinallcross-curngandissue-specificrecommenda*ons.

•  Involvedisabilityresearchers,developers,policyexperts,andadvocatesinallfederalandpublic-privatetaskforceschargedwithiden*fyingtechnologiesvitaltoaging,developingana*onalresearchplanandeduca*onalandtrainingmaterials,improvingregula*onandpaymentsystemsandproductdesignstandards,andshapingthefutureofassis*veandrobo*ctechnologies.

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Comments/Ques%ons?

Pleasecontact:MargaretL.Campbell,PhD

Margaret@Campbell.Associates

KeyReferences

1.  AProfileofOlderAmericans:2014wasdevelopedbytheAdministra*ononAging(AoA),Administra*onforCommunityLiving,U.S.DepartmentofHealthandHumanServices.(PrimarydatasourcesaretheU.S.CensusBureau,theNa*onalCenterforHealthSta*s*cs,andtheBureauofLaborSta*s*cs.)

2.  Kraus,Lewis.(2015).2015DisabilitySta*s*csAnnualReport.Durham,NH:UniversityofNewHampshire.(Primarydatasource:U.S.CensusBureau:AmericanCommunitySurvey)

3.  He,WanandLukeJ.Larsen,U.S.CensusBureau,AmericanCommunitySurveyReports,ACS-29,OlderAmericansWithaDisability:2008–2012,U.S.GovernmentPrin*ngOffice,Washington,DC,2014.

4.  InteragencyCommimeeonAssis*veTechnology,InteragencyCommimeeonDisabilityResearch.AccessibilityandUsabilityinHealthInforma*onTechnology:AResearch&Ac*onConferencetoEmpowerPeoplewithDisabili*es.OlderAdultsandCaregivers.Proceedings,September17-18,2015;Washington,DC(www.icdr.acl.gov)

5.  Source:AdaptedfromAdministra*onforCommunityLiving(hmp://www.acl.gov/NewsRoom/blog/2014/2014_07_09.aspx)