Empowering patients and strengthening self-management in ...users.ics.forth.gr/~kondylak/publications/2016_eHealthForum.pdf · 9.eclinicalWorks Patient Portal 10.MedHelp PHR 11 MyALERT

Empowering patients and strengthening

self-management in cancer diseases

The iManageCancer

personal health record

Haridimos Kondylakis

Computational BioMedicine Laboratory

2 Empowering patients and strengthening


• H2020 Research and innovation action for PHC-26-2014: Self-management of health and disease: citizen engagement and mHealth

• Start Feb 2015, duration 42 months

• Budget : 4.85 Mio

• 9 partners, coordinated by Fraunhofer-IBMT

• Aim: Empower cancer patients and support self-management with novel mHealth platform

iManageCancer - Facts



Motivation Cancer has become a chronic disease.

=> Increasing need for patients to manage their own care

Trends: smartphones, health apps & wearables ICT as a mean to transform the role of the patient from passive to

an active.

“iManageCancer aims to improve the lives of people livingwith chronic illnesses like cancer by harnessing the power ofmobile phone technology, and helping those with cancer takecontrol of their disease.”

4

“Social process of recognizing, promoting, and enhancing people’sabilities to meet their own needs, solve their own problems, and mobilize necessary resources to take control of their own lives”

Jones and Meleis, 1993

Education

Activation

Engagement

• Knowledge

• Re-elaboration

• Awareness

• Shared decision-making

• Participation

• Cooperation

• Self-management

Patient empowerment

5

Self-management as:“Awareness and active participation by the person in their recovery, recuperation, and rehabilitation, to minimise the

consequences of treatment, promote survival, health and well-being”

Self-management support as: “What health and social care professionals, and service delivery

organisations do to support self-management”National Cancer Survivorship Initiative (NCSI, 2009)

• Elicitation of preferences as a pre-requisite• Implementations of self-management support actions coherent

with preferences and abilities (McCorkle et al., 2011)• Interventions should be tailored/personalized and empirically

supported (Friedman et al., 2011; Leykin et al., 2012)

Self-management



iPHR

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

• The central access tool for all involved stakeholders



Access Management Layer

• Accessible from any kind of device (desktop, tablet, smartphone) by just using a browser

• The site automatically adapts to the screen analysis

• Translated into four languages

• English, German, Italian and Greek

• Security layer using through oAuth 2.0 and SSL



Target user groups• Primary users:

– Cancer patients: Adults, adolescents and children with cancer diseases in all phases of the care continuum

• Secondary users:– Patient’s family and friends– Patient’s clinicians

• Further users:– Researchers

• Access to patient data but only through the statistical APIs to ensure individual patient’s data protection

– Administrators

Reference groups for system evaluation:– Prostate cancer, breast and lung cancer– Childhood cancer



The Apps Layer

• Intelligent Apps• Personal Health

Information Recommender• Alerts• e-Diary• Drug Interactions

• General Health Monitoring• Demographics• Problems• Allergies• Vital Signs• Medications• Laboratory Examination• Procedures

• Psycho-emotional Apps

• Psycho-emotional

monitoring

• Family resilience tool

• Decision Aid

• Sharing & Interoperability

Apps

• Import/Export Profile

(RDF/XML)

• Integrate activity trackers

& sensors

• Appointments

• Imaging/Docs & Forum

• Medical Images

• Documents

• Forum

• Chat



General Health Monitoring

•Simple and Intuitive Forms for recording

• Demographics

• Problems

• Allergies

• Vital Signs

• Medications

• Laboratory Examination

• Procedures



Psycho-emotional status monitoring and management

Decisional preference

Patient Engagement

Experienced decisional role

Perceived control

Emotional profile

Cognitive needs

“If I regularly contact my oncologist, it will be less likely that I will have problems managing my

disease.”

“Having an active role in managing my disease is the most important factor to feel

better.”

“I prefer to make the final decision about my treatment afterseriously consideringmy doctor’s opinion.”



Family resilience evaluation

Utilizing social and economic

resources

(7 items)

“We are confident that, if necessary, our community network will support us” (item 26)

Family communication

and problem solving

(21 items)

Maintaining a positive outlook

(6 items)

“We feel to be strong enough to face the disease” (item 32)

Family connectedness

(5 items)

Ability to make

meaning from adversity

(3 items)

“Things we do make us feel like part of a family in this disease experience” (item 44)

Family spirituality

(4 items)

“We all take part to decisions about the illness management” (item 2)

“We rarely listen to doubts or problems that every family member has about the disease”(item 38 – reversed)

“We believe a supreme being exists and will help us cope with the disease” (item 41)



Decision aid to support patients’ participation in consultations• Decision Aid to help patients

– evaluate the cognitive and emotional values of the possible treatment options

– Clarify and individuate critical areas to investigate in the consultation

– Make an informed decision

• Information originated from the decision aid help clinicians:

– guide consultation based on themes that are relevant for the patient and to his family and social situation



• Collects and visualizes all relevant information helping patients to better understand their health information

• Offers a complete track of their health status

• Notifies them about important events such as appointments or taking medications

Intelligent Apps - eDiary



Intelligent Apps - Profiler• Questionnaire data feed patient

profile

• Visualizes questionnaire results for

doctors

• Reference group can be either

– Healthy People

– Cancer Patients

• Deviation from Reference group

can be calculated using

– Quartiles

– Z-scores

• Recommendations for patients to

doctors

– according to patient profile

• Explanation of scores in the

different categories



There is a lot of information on the internet 80% of adult internet users have googled for health

info [1].

…but it is hard for the patient to find the

correct one. Study: only 20% relevant [2].

The doctor can help

…but has too many patients and rarely has

the time. Study: volume of information increased 10-fold in 2

years [3].

[1] H. Taylor: eHealth Traffic Critically Dependent on Search Engines and Portals, 2004

[2] California Healthcare Foundation: Proceed with caution, 2001

[3] S.M. Edworthy: Crawling through the web: what do our patients find, J. Rheum. 2001.

Personal health information recommender

Smart access to cancer related content (for information and encouragement)



Diana AllenDisease: Breast cancer

Problem: Strep throat

Age: 40

Procedure: Biopsy

Medication: Amoxicillin

Find a treatment for me.

Therapeutic procedure

CUI:C0087111SNOMEDCT_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

Personal health information recommender in action



Smart Access Layer

HDOTLOINC-DE

ICD10 -DE

MESH-DE

WHOGER

DMDUMD

CPCGER

MDRGER

LOINC-IT

ICPCITA

MESH-IT

MDRITA

MSHITA

THMSTITA

German Italian

Semantic Core Ontology

[ERCIM2016]



In progress - Smart analytical

data servicesResponsive

Visualization - Selection

Data pre-processing

Data Analysis

• Aim: exploit anonymised patient data for clinical research on cancer

• Patients will consent to eachretrospective analysis with e-consent tool.

• Provide also patients anddoctors tools to assess theirdata



Next Steps

1 4 6 7 9 13 14 21 22 24 28 30 32 38 42

MS

1 S

yste

m D

esig

n S

pecific

ation

MS

2 Initia

l iM

angeC

ancer

Pla

tform

MS

3 iM

ange

Cancer

Pla

tform

V2

MS

4 E

valu

ate

d P

ilots

-V

ert

ical pro

toty

pe

-C

oncept

definitio

n D

2.1

-S

cenarios d

escription D

2.2

-sta

kehold

er

work

shop

-Technic

al syste

m r

equirem

ents

D2.3

Launch e

vent

Adults pilot 1

Pilot for children: Phase1 Phase 2

Adults pilot 2



Competition

1.Microsoft HealthVault

2.Web MD Health Manager

3.NoMoreClipboard

4.PatientsLikeMe

5.Patient Ally

6.Patient Fusion

7.MyOscar

8.myMediConnect

9.eclinicalWorks Patient Portal

10.MedHelp PHR

11.MyALERT

12.CareZone PHR

13.Indivo-X

14.Epic MyChart

15.911 Medical ID

16.zweena PHR

17.MedicAlert

18.Tolven

19.HealtheTracks

20.LifeLedger

21.OpenMRS

22.KIS PHR

23.MedicKey PHR

24.Dossia

25.Minerva Health Manager



Overall expected advances

• Interactive animated personal health record

• Advanced assessments of psycho-emotional status and health condition of cancer patients for personalised service provision

• Advanced health information management - Access to high quality cancer information suitable for patients for decision making

• Novel analysis tools for public health research on cancer

• Advances in semantic integration of heterogeneous eHealth data



Expected impact

• The project will empower cancer patients and their relatives to better manage the cancer disease in all phases of the cancer care continuum in collaboration with their healthcare providers.

• It will motivate the cancer patient to participate more in the care process, share information with the clinician in a more efficient and effective way.

• Alleviate the psychological burden by dedicated serious games for adult and young patients and psycho-emotional evaluation and clinician-patient communication services.



Expected impact

• Improve the individual’s understanding of his/her health condition, reduce unnecessary visits to the hospital and improve quality of life.

• Support the patient and family more efficiently and keep track of their psycho-emotional status

• Improve all the stakeholders interactions within the care process and provide the patient a multi-faceted support based on IT tools and services.

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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 diseasesAcknowledgements



Psycho-emotional status monitoring and managementBased on extended ALGA-C questionnaire• Can be used to

• Optimize patient-doctor interaction

• Regularly monitor psycho-emotional status of the patient

• Includes:– Psychological aspects (Anxiety, Depressive symptoms, Self-efficacy)

– Psychosocial aspects (Social abilities, Financial problems , Sexual problems, Body image)

– Cognitive aspects (Memory and GSRH attention, Rumination, Cognitive closure)

– Perceived health states (GSRH, Pain, Fatigue, Physical abilities, Appetite)

– Patient activation (disengaged and overwhelmed, becoming aware but struggling, taking action, maintaining behaviour)

– Need for cognition (high, low)

– Decisional control preferences (passive, shared, active)

– Health Locus of Control (Internal, External, Powerful Doctors, Powerful Others)



High-level architecture