Eleni Kaldoudi, Empowering Patients through Information Technologies, Keynote Speech, IUPESM World Congress 2015, Toronto, Canada, June 7-12, 2015 Patient empowerment is about enabling the patients to be involved in managing disease and adopting and sustaining health promoting behaviors. Patient empowerment, although a popular concept, is rather ill defined. This lecture aims to elucidate the different meanings and perceptions, together with misconceptions, that surround this construct, and to discuss how patient empowerment relates to current medical methodologies, such as evidence based medicine, and other societal and organizational factors. Furthermore, the lecture will provide an overview of how information and communication technologies are employed to empower patients, with emphasis in chronic patients with comorbidities. The discussion will first address the “who”. This includes an overview of common health problems that call for empowered patients, the types of patients that normally engage in empowering interventions and the specifics of the stakeholders who design and support such interventions. Then we will look at the “how”. The discussion here will focus on an overview of the diverse approaches and services that have been deployed to empower patients. This will also include the span of various technologies used and, where applicable, their measured induced outcome for the patient and the health care process. Although the “who” and “how” of patient empowerment can rather easily be discerned from a literature research, the “what” is rather more elusive. The concept of patient empowerment has emerged as a new paradigm that can help improve medical outcomes while lowering costs of treatment by facilitating self-directed behavior change. Patient empowerment has gained even more popularity since the 1990’s, due to the emergent of eHealth and its focus on putting the patient in the centre of the interest. Current literature provides systematic reviews of the area, and shows that well defined areas (or dimensions) have eventually emerged in the field: education, engagement, and control. Despite such findings, current research lacks of a structured approach towards patient empowerment. In an attempt to shed more light onto the process of empowering patients, this lecture will discuss a newly proposed holistic model of patient empowerment as a cognitive process, where we acknowledge three levels of increasing complexity and importance: awareness, participation, and control. The lecture will conclude with a proof of concept example of using this approach to develop and evaluate empowerment services for the comorbid cardiorenal patient or the patient at risk of this condition. Open issues and challenges will be presented for discussion with the audience.

1. Empowering Patients through
Information Technologies
Eleni Kaldoudi
Associate Professor, School of Medicine
Democritus University of Thrace, Greece
kaldoudi@med.duth.gr
SP169 - Self Engagement, Patient
Empowerment and mHealth

2. E. Kaldoudi, IUPESM WC2015, June 2015, slide #2
Eleni Kaldoudi
Associate Professor
Physics of Medical Imaging & Telemedicine
School of Medicine
Democritus University of Thrace
Alexandroupoli, Greece
http://iris.med.duth.gr/kaldoudi
BSc in Physics, 1987, Aristotle Univ. of Thessaloniki, Greece
MSc in Medical Physics, 1989, Surrey University, UK
PhD, 1994, Dept. of Medical Physics & Bioengineering, Univ. of London, UK
Research Associate, 1995-1999, ICS-FORTH, Greece
Treasurer, EAMBES: European Alliance of Medical & Biological Engineering & Science
Member of the IFMBE Committee on Women in Medical & Biological Engineering
Associate Editor Frontiers in ICT
Editorial Board member, Journal of Biomedical Education
Advisory Board Member in EU FP7-ICT projects NEPHRON+ & MyHealthAvatar
Coordinator of FP7-ICT project CARRE on cardiorenal patient empowerment
Research: personal health applications, patient empowerment, quantified self
Teaching: physics in medicine and biology, medical informatics

3. E. Kaldoudi, IUPESM WC2015, June 2015, slide #3
patient empowerment
a process where
patients are encouraged to think critically and act autonomously
promotes self-regulation, self-management and self-efficacy
in order to achieve maximum health and wellness
empowerment: a process by which people, organizations, and communities
gain mastery over their affairs

4. E. Kaldoudi, IUPESM WC2015, June 2015, slide #4
“why” empower
 sustain good health and prevent health deterioration
 lifestyle related disease, e.g. cancer,
cardiovascular and respiratory chronic disease
 recognize early signs of disease
 new disease or disease progression or transition
to comorbid situation
 manage every day practical issues
 manage a common, chronic, progressive, costly,
health burden at home
 gain control and co-decide on
treatment and disease management options
prevent
detect
manage
decide

5. E. Kaldoudi, IUPESM WC2015, June 2015, slide #5
“who” is to be empowered
 healthy citizens
 to adopt and sustain a healthy lifestyle and detect disease early
 chronic patients
 autonomously manage everyday practical issues
 adhere to therapy and monitoring
 detect disease progression and transition to comorbidities
 all patients
 cope with disease
 co-decide on treatment and disease management
also involved
 family and social environment: to cope and to be able to care
 healthcare providers: to be aware and support when needed

6. E. Kaldoudi, IUPESM WC2015, June 2015, slide #6
“how”
input data processing delivery

7. E. Kaldoudi, IUPESM WC2015, June 2015, slide #7
“how”
educational resources
for patients medical evidence
knowledge
quantified self
personal
health
records
personal
sensors
intentions,
plans,
beliefs, etc.
analytics
web pages
social media
personal health
applications
…
input data processing delivery
decision support
systems
predictive
systems
data integration
semantics

8. E. Kaldoudi, IUPESM WC2015, June 2015, slide #8
so, we have a good grasp of…
the context
 who: healthy citizen, chronic patients, all patients,
family, healthcare providers
 why: prevent, detect, manage, decide
the process:
 how: educational content, medical evidence, sensors, personal
health and other systems, data integration, semantics
analytics, predictive systems, decision support systems,
web technologies, mobile devices, smart phones, …
but, it is still unclear…
the content:
 what is to be designed and evaluated
in a patient empowerment intervention
Symons’ evaluation onion, Context-Process-Content (Symon 1991 & Pettigrew 1985)

9. E. Kaldoudi, IUPESM WC2015, June 2015, slide #9
R. Bengoa,
Regional Minister for Health and Consumer Affairs
for the Basque Country of Spain (2012):
“Suppose I am a patient:
I have 12,000 apps about chronic disease, access to my
records and a battery of gadgets for home support.
Am I more empowered?”
The WHO, Empowering Patients, 17-4-2012
http://www.euro.who.int/en/what-we-do/health-topics/noncommunicable-
diseases/sections/news/2012/4/empowering-patients

10. E. Kaldoudi, IUPESM WC2015, June 2015, slide #10
patient empowerment so far …
education
controlengagement
 maintain or improve health
 know how to care for
themselves
 cooperate with
health professionals
 actively engage in
disease self-
management
actively participate in
health related decisions

11. E. Kaldoudi, IUPESM WC2015, June 2015, slide #11
0
500
1000
1500
2000
2500
3000
3500
4000
4500
5000
pubishedpapersperyear
year of publication
patient education
engagement
empowerment
patient education
patient engagement
patient empowerment
searching PubMed
E. Kaldoudi, N. Makris, HealthInf 2015

12. E. Kaldoudi, IUPESM WC2015, June 2015, slide #12
empowerment as a cognitive process
empowerment  control on one’s own actions

complex construct that involves various cognitive processes and skills
 knowledge acquisition, through perception
 thinking and learning
 awareness of one’s own current conditions and /or needs
 active participation in the management of the current or future
condition and in the relevant decision making
thus, following the overall approach of cognitive psychology…

13. E. Kaldoudi, IUPESM WC2015, June 2015, slide #13
empowerment as a cognitive process
awarenessengagementcontrol
understanding: personal health condition awareness
knowledge: relevant, structured information with a purpose
information: data and information aggregation
action, participation
emotional
support
suitable,
supportive
physical
environment
enabling
technological
framework
feedback
mechanisms
shared decision
decision
support
collaboration
communication
mindchange
E. Kaldoudi, N. Makris, HealthInf 2015

14. E. Kaldoudi, IUPESM WC2015, June 2015, slide #14
combine personal data with
generic medical evidence
semantic linking to produce concept
maps of educational data
visual analytics to simplify complex
expert information
links to relevant educational content on
on-line educational repositories
(MedLinePlus, wikipedia)
knowledge
information
understanding
awareness: understand own health condition
access to information
structuring and organizing information
with a particular purpose
ability to realize medical evidence
in relation to their personal condition

15. E. Kaldoudi, IUPESM WC2015, June 2015, slide #15
participation & action
enabling
technological
framework
personal
sensors and
applications
smart alerts
feedback
mechanisms
feedback to the
patient
and from the
patient
engagement
emotional
support
on-line social
networks
supportive
physical
environment
describe &
exploit health
content of the
physical
environment

16. E. Kaldoudi, IUPESM WC2015, June 2015, slide #16
control: decision making
shared decision
decision
support
collaboration
communication
collaborative spaces
personal health records
decision support systems

17. E. Kaldoudi, IUPESM WC2015, June 2015, slide #17
control: mind change
modify one’s own mental states, e.g. beliefs, emotions, intentions,
and thus achieve and maintain a healthy behavior
 identify motivation, attitude, habits
 design interventions
to change first representations
then behaviours
requires highly interdisciplinary research cognitive
emotional
social

18. E. Kaldoudi, IUPESM WC2015, June 2015, slide #18
a case example:
empowering the chronic comorbid patient
facts:
 significant increase in the prevalence and incidence
of chronic disease
 ½ of all chronic patients
present comorbidities
 the chronic patient is mostly
an outpatient
 needs to care for herself at home
 mainly away from
continuous professional care
 while trying to lead a normal life
prevent
detect
manage
E. Kaldoudi, V. Vargemezis, IFMBE MEDICON 2010

19. E. Kaldoudi, IUPESM WC2015, June 2015, slide #19
cardiorenal disease & comorbidities
some numbers…
 hypertension  1/3 of adults (US 2008)
 diabetes  8% of overall population
 chronic kidney disease  9-16% of overall population
 44% of chronic kidney disease is due to diabetes
 86% of chronic kidney disease has at least 1 comorbidity
 most patients with chronic kidney disease develop
cardiovascular disease
 chronic heart failure  1-2% of total healthcare costs
 end-stage renal disease (dialysis)  >2% of total healthcare costs
E. Kaldoudi, N. Dovrolis, IFIP PRO-VE 2013

20. E. Kaldoudi, IUPESM WC2015, June 2015, slide #20
CARRE
Cardiorenal
comorbidity management
via empowerment and
shared informed decision
FP7-ICT-2013-611140
consortium: 6 partners from 4 EU countries
coordinator: Eleni Kaldoudi (DUTH)
duration: Nov 2013 – Oct 2016
budget: 3,210,470€
http://carre-project.eu/
DUTH The Open
University, UK
Univ. of Bedfordshire Vilnius Univ. Hospital
Kaunas Univ.
Industrial Research Institute
for Automation & Measurements

21. E. Kaldoudi, IUPESM WC2015, June 2015, slide #21
CARRE
approach
foster understanding of comorbid condition
calculate informed comorbidity progression
compile personalized empowerment services
support shared informed decision and
integrated management

22. E. Kaldoudi, IUPESM WC2015, June 2015, slide #22
medical evidence
aggregation
evidence based
medical literature
Educational
resources
…
social media
personal health
information
quantified
self
weight
physical activity
blood pressure
glucose
CARRE approach
private
public
data harvesting
& interlinking
LOD
comorbidity model visualization
(generic and personalized)
patient empowerment &
decision support services
E. Kaldoudi, et al. CARRE D.2.2, 2014, www.carre-project.eu
Intention extraction: G. Drosatos, A. Arampatzis, E. Kaldoudi, IUPESM WC2015

23. E. Kaldoudi, IUPESM WC2015, June 2015, slide #23
risk factor as a central concept
disorder 1
(as a risk factor)
disorder 2
(as a probable
consequence)
leads to
under certain
conditions
with a
probability x
E. Kaldoudi, et al. CARRE D.2.1, 2014, www.carre-project.eu
risk factors derived from clinical studies and reported in medical literature
(top level evidence: systematic reviews with meta-analysis)

24. E. Kaldoudi, IUPESM WC2015, June 2015, slide #24
risk factor as a central concept
CARRE ontology published in NCBO BioPortal
http://bioportal.bioontology.org/ontologies/CARRE
conceptual model
E. Kaldoudi, et al. CARRE D.2.2, 2014, www.carre-project.eu

25. E. Kaldoudi, IUPESM WC2015, June 2015, slide #25
CARRE ontology published in NCBO BioPortal
http://bioportal.bioontology.org/ontologies/CARRE

26. E. Kaldoudi, IUPESM WC2015, June 2015, slide #26
some of the major related conditions
1. Acute kidney injury
2. Acute myocardial
infarction
3. Age
4. Albuminuria
5. Anaemia
6. Angina pectoris
7. Asthma
8. Atrial fibrillation
9. Chronic kidney disease
10. Chronic obstructive
pulmonary disease
11. Cholelithiasis
12. Colorectal Cancer
13. Coronary and carotid
revascularisation
14. Death
15. Depression
16. Diabetes
17. Diabetic nephropathy
18. Drugs
19. Dyslipidemia
20. Family history
21. Heart Failure
22. Hyperkalemia
23. Hypertension
24. Hyperuricemia
25. Hypoglycaemia
26. Ischemic heart disease
27. Ischemic stroke
28. Left ventricular
hypertrophy
29. Obesity
30. Obstructive Sleep Apnoea
31. Myocardial infarction
32. Osteoarthritis
33. Pancreatic Cancer
34. Peripheral Arterial
Disease
35. Physical activity
36. Smoking
37. …

27. E. Kaldoudi, IUPESM WC2015, June 2015, slide #27
obesity diabetescauses
when 23BMI34
risk ratio = 1.61
obesity hypertensioncauses
when 99.4  Waist Circumference  106.2 AND sex=male
risk ratio = 2.50
obesity heart failurecauses
when 25  BMI  30 AND sex=female
risk ratio = 2.50

28. E. Kaldoudi, IUPESM WC2015, June 2015, slide #28
hypertension
chronic renal
diseasecauses
when systolic BB  140mmHg AND/OR diastolic BB  90 mmHg
risk ratio = 2.00
smoking
chronic renal
diseasecauses
when smoking status = current AND sex=male
risk ratio = 2.40
so far… 268 major risk associations (identified in medical literature)
(which involve 45 health conditions and 47 related observables)
as included in the CARRE risk factor database and predictive model

29. E. Kaldoudi, IUPESM WC2015, June 2015, slide #29
CARRE risk factor database and predictive model

30. E. Kaldoudi, IUPESM WC2015, June 2015, slide #30
a partial view of the graph…

31. E. Kaldoudi, IUPESM WC2015, June 2015, slide #31
intuitive presentations for patients
work in progress

32. E. Kaldoudi, IUPESM WC2015, June 2015, slide #32
interactive risk prediction and planning
exercise
weight
blood pressure
blood glucose
work in progress

33. E. Kaldoudi, IUPESM WC2015, June 2015, slide #33
awarenessengagementcontrol
understanding
knowledge
information
action, participation
emotional
support
suitable,
supportive
physical
environment
enabling
technologica
l framework
feedback
mechanisms
shared
decision
mindchange
enabling framework:
interactive model to allow planning and
a set of alarms to enable patient engagement
and give feedback
empowerment in CARRE
generic model of disease progression pathways
and comorbidities trajectories, based on current
medical evidence
personalized, interactive risk model of disease
progression and transition
advanced decision support services and
mindchange interventions based on the real-
time coupling of medical evidence, personal
health status and intentions and beliefs, as
deduced from social web data mining

34. E. Kaldoudi, IUPESM WC2015, June 2015, slide #34
health education
for the public
customization for
relevant and meaningful
health information
self awareness for
engagement & control
in health and disease
prevention & management
+
quantified self
personal
decision support system
to summarize…
medical evidence

35. E. Kaldoudi, IUPESM WC2015, June 2015, slide #35
to summarize…
general health information for the public
customized health information and guidelines for the individual
self-awareness for informed decision and control
but, are we still missing out on something?

36. E. Kaldoudi, IUPESM WC2015, June 2015, slide #36
health content
of the environment
via
life context descriptions &
participatory sensing
change of paradigm:
making environments work for people
quantified self
personal
decision support system
medical evidence

37. acknowledgment
work funded under project CARRE
co-funded by the
European Commission under the
Information and Communication Technologies (ICT)
7th Framework Programme
Contract No. FP7-ICT-2013-611140
CARRE: Personalized patient empowerment
and shared decision support
for cardiorenal disease and comorbidities
http://www.carre-project.eu/

38. Contact
Eleni Kaldoudi
Associate Professor
School of Medicine
Democritus University of Thrace
Dragana, Alexandroupoli
68100 Greece
Tel: +302551030329
Tel: +30 6937124358
Email: kaldoudi@med.duth.gr
Email: carre@med.duth.gr
Cite as
Eleni Kaldoudi
Empowering Patients through
Information Technologies
Keynote Speech
IUPESM World Congress 2015
Toronto, Canada
June 7-12, 2015
http://wc2015.org/