iManageCancer - MASCC Home€¦ · Breast Cancer CUI:C0006142 ICD10:C50-C50.9 Malignant neoplasm,...
Transcript of iManageCancer - MASCC Home€¦ · Breast Cancer CUI:C0006142 ICD10:C50-C50.9 Malignant neoplasm,...
iManageCancer
ResultsofaEuropeanR&DProjectonEmpoweringPa8entsandStrengtheningSelf-ManagementinCancerDiseases
StephanKiefer,FraunhoferIns8tuteBiomedicalEngineering,St.Ingbert,Germany
Faculty Disclosure
Company Name Honoraria/ Expenses
Consulting/ Advisory Board
Funded Research
Royalties/ Patent
Stock Options
Ownership/ Equity
Position Employee Other
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X No, nothing to disclose Yes, please specify:
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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