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Patient Empowerment as a Cognitive Process
Eleni Kaldoudi, Nikos Makris
School of Medicine & School of Educational Sciences
Democritus University of Thrace, Greece
kaldoudi@med.duth.gr
HealthInf 2015: 8th International Conference on Health
Informatics, Lisbon, Portugal, 12-15 January, 2015
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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, DUTH HealthInf Lisbon, 13 January 2015
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, DUTH HealthInf Lisbon, 13 January 2015
CARRE
Cardiorenal
comorbidity management
via empowerment and
shared informed decision
FP7-ICT-2013-611140
consortium: 6 partners
4 EU countries
duration: Nov 2013 – Oct 2016
budget: 3,210,470€
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
CARRE
approach
foster understanding of comorbid condition
calculate informed comorbidity progression
compile personalized empowerment services
support shared informed decision and
integrated management
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
patient
empowerment
CARRE methodology
dynamic generic
and personalized
cardiorenal
comorbidities
model
interactive
visualization of
the model
data/model
driven decision
support system
semantically
interlinked data
from
heterogeneous
sources
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
so, we have a good grasp of…
the context
 who: cardiorenal patients
 why: prevent and manage a common, chronic,
progressive, costly, health burden
the process:
 how: data integration, semantic technologies,
visual analytics, decision support systems
but, it is still unclear…
the content:
 what is to be designed and evaluated
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
0
500
1000
1500
2000
2500
3000
3500
4000
4500
5000
pubishedpapersperyear
year of publication
patient education
patient engagement
patient empowerment
searching PubMed
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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…
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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
cognitive
emotional
social
shared decision
decision
support
collaboration
communication
mindchange
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
participation & action
enabling
technological
framework
personal
sensors and
applications
smart alerts
feedback
mechanisms
feedback to the
patient
engagement
emotional
support
on-line social
networks
supportive
physical
environment
describe &
exploit health
content of the
physical
environment
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
control: decision making
shared decision
decision
support
collaboration
communication
collaborative spaces
personal health records
decision support systems
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
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
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
mapping CARRE services to the empowerment model.
model level CARRE service
awareness:
information aggregation
and knowledge
provide visual and quantitative model of disease
progression pathways and comorbidities trajectories,
based on current medical evidence
awareness:
understanding
personalize the risk model to each individual based on
his personal medical data and real-time sensor
measurement to support disease status awareness
engagement:
enabling framework
use the personalized model in conjunction with real
time monitoring to create a set of alarms to enable
patient engagement and give feedback
control:
provide 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
E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015
work in progress
based on the understanding of the “content” (the what”)
 design appropriate evaluation methodology
that follows the various levels of the
empowerment model
 make informed selection of
and/or construct appropriate
evaluation tools for
each level of the
empowerment model
Symons’
evaluation onion
(Symon 1991 & Pettigrew 1985)
process: how
content:
what
context:
who, why
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/
Contact
Eleni Kaldoudi
Associate Professor
School of Medicine
Faculty of Health Sciences
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
E. Kaldoudi, N. Makris,
Patient Empowerment as a Cognitive Process,
In: C. Verdier, M. Bienkiewicz, A. Fred, H.
Gamboa and D. Elias (Eds),
The Proceedings of HealthInf 2015: 8th
International Conference on Health
Informatics, pp. 605-610,
Lisbon, Portugal,
12-15 January, 2015
ISBN: 978-989-758-068-0
http://www.healthinf.biostec.org/

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Patient Empowerment as a Cognitive Process

  • 1. Patient Empowerment as a Cognitive Process Eleni Kaldoudi, Nikos Makris School of Medicine & School of Educational Sciences Democritus University of Thrace, Greece kaldoudi@med.duth.gr HealthInf 2015: 8th International Conference on Health Informatics, Lisbon, Portugal, 12-15 January, 2015
  • 2. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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
  • 3. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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
  • 4. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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
  • 5. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 CARRE Cardiorenal comorbidity management via empowerment and shared informed decision FP7-ICT-2013-611140 consortium: 6 partners 4 EU countries duration: Nov 2013 – Oct 2016 budget: 3,210,470€
  • 6. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 CARRE approach foster understanding of comorbid condition calculate informed comorbidity progression compile personalized empowerment services support shared informed decision and integrated management
  • 7. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 patient empowerment CARRE methodology dynamic generic and personalized cardiorenal comorbidities model interactive visualization of the model data/model driven decision support system semantically interlinked data from heterogeneous sources
  • 8. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 so, we have a good grasp of… the context  who: cardiorenal patients  why: prevent and manage a common, chronic, progressive, costly, health burden the process:  how: data integration, semantic technologies, visual analytics, decision support systems but, it is still unclear… the content:  what is to be designed and evaluated
  • 9. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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
  • 10. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 0 500 1000 1500 2000 2500 3000 3500 4000 4500 5000 pubishedpapersperyear year of publication patient education patient engagement patient empowerment searching PubMed
  • 11. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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…
  • 12. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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 cognitive emotional social shared decision decision support collaboration communication mindchange
  • 13. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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
  • 14. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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
  • 15. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 participation & action enabling technological framework personal sensors and applications smart alerts feedback mechanisms feedback to the patient engagement emotional support on-line social networks supportive physical environment describe & exploit health content of the physical environment
  • 16. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 control: decision making shared decision decision support collaboration communication collaborative spaces personal health records decision support systems
  • 17. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 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, DUTH HealthInf Lisbon, 13 January 2015 mapping CARRE services to the empowerment model. model level CARRE service awareness: information aggregation and knowledge provide visual and quantitative model of disease progression pathways and comorbidities trajectories, based on current medical evidence awareness: understanding personalize the risk model to each individual based on his personal medical data and real-time sensor measurement to support disease status awareness engagement: enabling framework use the personalized model in conjunction with real time monitoring to create a set of alarms to enable patient engagement and give feedback control: provide 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
  • 19. E. Kaldoudi, DUTH HealthInf Lisbon, 13 January 2015 work in progress based on the understanding of the “content” (the what”)  design appropriate evaluation methodology that follows the various levels of the empowerment model  make informed selection of and/or construct appropriate evaluation tools for each level of the empowerment model Symons’ evaluation onion (Symon 1991 & Pettigrew 1985) process: how content: what context: who, why
  • 20. 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/
  • 21. Contact Eleni Kaldoudi Associate Professor School of Medicine Faculty of Health Sciences 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 E. Kaldoudi, N. Makris, Patient Empowerment as a Cognitive Process, In: C. Verdier, M. Bienkiewicz, A. Fred, H. Gamboa and D. Elias (Eds), The Proceedings of HealthInf 2015: 8th International Conference on Health Informatics, pp. 605-610, Lisbon, Portugal, 12-15 January, 2015 ISBN: 978-989-758-068-0 http://www.healthinf.biostec.org/