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iManageCancer

ResultsofaEuropeanR&DProjectonEmpoweringPa8entsandStrengtheningSelf-ManagementinCancerDiseases

StephanKiefer,FraunhoferIns8tuteBiomedicalEngineering,St.Ingbert,Germany

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EMPOWERINGPATIENTSANDSTRENGTHENINGSELF-MANAGEMENTIN

CANCERDISEASES

2/2015 – 7/2018 http://imanagecancer.eu/

This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 643529. This presentation reflects the authors’ view. The Commission is not responsible for any use that may be made of the information it contains.

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• Shareddecision-making• Par8cipa8on

Patient empowerment “Socialprocessofrecognizing,promoDng,andenhancingpeople’sabiliDestomeettheirownneeds,solvetheirownproblems,andmobilizenecessaryresourcestotakecontroloftheirownlives”

JonesandMeleis,1993

EducaDon

AcDvaDon

Engagement• Knowledge• Re-elabora8on• Awareness

• Coopera8on• Self-management

Motivation: Cancer as a chronic disease

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Use Case scenarios

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Features

mHealth platform to support cancer patients and their relatives   Cancer specific PHR and eDiary   Drug management and drug safety   Intelligent information services and decision aids   Management support for pain, fatigue and psycho-emotional resilience   Predictive models for side-effects during chemotherapy   Serious games for kids and adults to educate and motivate

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iPHR Intelligent personal health record and e-diary

Game for Kids Kill the cancer cells with the help of your social network

Game for Adults Manage your health city

MyHealthAvatar Monitoring and managing lifestyle

iManageMyHealth Managing drugs, drug safety, vital signs, lab values, pain and fatigue

iManageCancer Platform (1)

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Visual Analytics for patient cohorts with e-consent and de-identification tool

Care Flow Designer and Engine

iSupportMyPatients Data sharing with the physician and predictive patient management

Care Flow Engine and Model Repository Care flows and predictive decision support for patients and doctors

iManageCancer Platform (2)

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iPHR

SomeoftheiPHRapps(fromlefttoright:psycho-emotionalstatus,pro;iler,personalhealthinformationsearchengine,e-diary)

Enabling an individual to own and manage a complete, secure, digital copy of their health information

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Personal health information recommender

Diana Allen Disease: Breast cancer Problem: Strep throat Age: 40 Procedure: Biopsy Medication: Amoxicillin

Find a treatment for me.

Therapeutic procedure CUI:C0087111 SNOMEDCT_US:277132007

Breast Cancer CUI:C0006142 ICD10:C50-C50.9 Malignant neoplasm, breast, unspecified

Biopsy CUI:C0005558 SNOMEDCT_US: 86273004

Streptococcal sore throat

CUI:C0036689 ICD9CM:034.0

Amoxicillin CUI:C0002645 RXNORM:723

Smart access to cancer related content for information and education

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Novel questionnaire based electronic tools to empower cancer patients ►  Psycho-emo8onalstatusmonitoringbasedon

extendedALGA-Cques8onnaire►  Familyresilienceevalua8ontool►  Decisionaidtosupportpa8ent’spar8cipa8onin

consulta8ons

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MyHealthAvatar

•  GoalseUng•  Healthprogramandeduca8on

•  Measure&detectthequalityoflifechange

•  Focusonprostatecancerandbreastcancer

Promote healthy lifestyle and support patients in achieving their health goals

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iManageMyHealth App Support patients in managing their drugs and their paper based health information

Services: n  Drug management

Easy creation of a medication plan with reminders for drug intakes. Recording of outcome and side effects.

n  Drug safety Check for contra indications and drug-drug interactions

n  Document management n  Vital sign

monitoring n  Specific management services

Pain, fatigue, …

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Serious games to fight cancer Gameforchildren:n  Shootergamewherethechildfightagainst

itsowncancercellsn  Supportfromfriendsandrela8vesthrougha

strongsocialcomponentMainobjec8ves

►  Aidwithpsycho-emo8onalsupport

►  Letthechildfocusontherightenemy,thecancercells

►  Letthechildlearnaboutitsdisease►  Raisesthechild’sacceptanceofthe

treatment► Measure&detectthequalityoflife

change

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Serious games to fight cancer Gameforadults:► Alifestylemanagementgame

Theuserwillbalanceavailableac8vi8esinordertoincreasetheiravatarshappinesswhilemanagingsymptomsandtreatments.Thegame’spurposeiseducaDoninhealthcare.

► Gameplayisbasedonachievinggoalsusingamobiledevice’sclickanddraginterface.Theuserwillplaythroughanumberofscenarioscontainingmanagementchallenges,comple8ngchallengeswillallowprogressiontothenextscenarioandearnrewards.

► Theuserscandrawparallelsbetweentheiravatarsimprovementsandtheirownreallife.

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Care Flow Designer and Engine

iSupportMyPatients Data sharing with the physician and predictive patient management

Care Flow Engine and Model Repository Care flows and predictive decision support for patients and doctors

Decision Support Framework

iManageMyHealth Managing drugs, drug safety, vital signs, lab values, pain and fatigue

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Guidance to manage side effects and therapy with patient pathway models ►  CareFlowEngineanalysesrecordeddata,

detectshealthproblemsandprovidesindividualizedsupport.

►  CareFlowEngineexecutesworkflows(processes)withinthesystemthatinvolvepa8entsanddoctors.

►  Clinicalexpertcandesignaformalmanagementworkflowforaspecifictherapyrelatedproblem(i.e.fa8guemanagement,painmanagement)thatthesystemwillexecute.

►  Modelsforsideeffectpredic8on(i.e.neutropenia)canbeincludedinthemanagementworkflowsatdecisionpoints

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Decision support for chemotherapy monitoring

Focus:FebrileNeutropenia

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Pilot for children

Game4KidsiPHR

ParentalDistressQues8onnaire(Dietrichetal2014):hdps://ob8ma.org/alga-c/kids

Nohealthcareprofessionalsinvolved!

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Faced obstacles Parentshadthefollowingproblemsandconcerns:–  FurtherstresswithusingsuchanITtool–  Complaintsthatdataneedtobedeletedahertheendoftheproject–  Theydonotwantthattheirchildrenspendtoomuch8mewithplayingonlinegames

–  Fearthatthegamewillcausestressforthechildren.Theymayfeelthattheyareresponsibleiftreatmentfailsbecausetheydon’tplaywellenoughorlongenough

–  Numberoffriendssuppor8ngtheirkidsmightbelowerthaninotherchildren

Childrenshowedthefollowingproblems:–  Underchemotherapytheyjustwanttosleepinthehospital–  Athometheywanttoplaywiththeirfriendsandnottothinkabouttheirdisease

–  Aherawhilethegameloosesadrac8veness

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eHI(N=64)

UseofiManageCancerplalorm

Breastcancerpa8ents(N=32)

Prostatecancerpa8ents

(N=32)

IM(N=64)Informa8veMaterialonapaperformat

Breastcancerpa8ents(N=32)

Prostatecancerpa8ents

(N=32)

Baseline Patient Health

Engagement Scale (main endpoint) Resilience Scale for Adults Mini – Mental Adjustment to Cancer Profile of Mood States

6-8

wee

ks

eHI > use of the platform IM > standard care

T1 Patient Health

Engagement Scale (main endpoint) Resilience Scale for Adults Mini – Mental Adjustment to Cancer Profile of Mood States Usability assessment (only for eHI group)

T2

Patient satisfaction questionnaire Costs assessment

Pilot for adults

Nohealthprofessionalsinvolved!

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Intermediate results and issues faced •  Recruitmentrate46.5%•  Difficul8esusingtheapps(bugs,technologicalliteracy)•  Lackof8meandinterestintheapps•  Stress•  Lackofindica8ononhowmuch8metodedicate•  Perceivedusefulnessoftheplalormislowinprostatecancerpa8ents

•  Womenfoundthemonitoringfeaturesuseful(exercise,sleep,mood,etc)aswellasthepostsurgicalphysiotherapyexercises.

•  Pa8entsappreciatedsearchengine:provisionofreliableinforma8on

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Conclusions and lessons learned •  Comprehensivemobileplalormforcancerpa8entsprovided

•  Usabilityisamajorkeytosuccess.KISprinciple.•  ‘One-size-fits-all’-approachdoesnotworkforcancer

•  Readinessofpa8entstousehealthapps•  Thevalueofthetoolsismuchhigherifthecliniciansareintheloop

•  Standardizedclinicalguidelinesrequiredtoadvicepa8entshowtocopewithmonitoredfindings

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This project has received funding from the European Union’s Horizon 2020 research and innovation programme

under grant agreement No 643529.

Empowering patients and strengthening self-management in cancer diseases

Acknowledgements