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Empowering Patients through
Information Technologies
Eleni Kaldoudi
Associate Professor, School of Medicine
Democritus Uni...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #2
Eleni Kaldoudi
Associate Professor
Physics of Medical Imaging & Telemedici...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #3
patient empowerment
a process where
patients are encouraged to think criti...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #4
“why” empower
 sustain good health and prevent health deterioration
 lif...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #5
“who” is to be empowered
 healthy citizens
 to adopt and sustain a healt...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #6
“how”
input data processing delivery
E. Kaldoudi, IUPESM WC2015, June 2015, slide #7
“how”
educational resources
for patients medical evidence
knowledge
quanti...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #8
so, we have a good grasp of…
the context
 who: healthy citizen, chronic p...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #9
R. Bengoa,
Regional Minister for Health and Consumer Affairs
for the Basqu...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #10
patient empowerment so far …
education
controlengagement
 maintain or im...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #11
0
500
1000
1500
2000
2500
3000
3500
4000
4500
5000
pubishedpapersperyear
...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #12
empowerment as a cognitive process
empowerment  control on one’s own act...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #13
empowerment as a cognitive process
awarenessengagementcontrol
understandi...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #14
combine personal data with
generic medical evidence
semantic linking to p...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #15
participation & action
enabling
technological
framework
personal
sensors ...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #16
control: decision making
shared decision
decision
support
collaboration
c...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #17
control: mind change
modify one’s own mental states, e.g. beliefs, emotio...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #18
a case example:
empowering the chronic comorbid patient
facts:
 signific...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #19
cardiorenal disease & comorbidities
some numbers…
 hypertension  1/3 of...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #20
CARRE
Cardiorenal
comorbidity management
via empowerment and
shared infor...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #21
CARRE
approach
foster understanding of comorbid condition
calculate infor...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #22
medical evidence
aggregation
evidence based
medical literature
Educationa...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #23
risk factor as a central concept
disorder 1
(as a risk factor)
disorder 2...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #24
risk factor as a central concept
CARRE ontology published in NCBO BioPort...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #25
CARRE ontology published in NCBO BioPortal
http://bioportal.bioontology.o...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #26
some of the major related conditions
1. Acute kidney injury
2. Acute myoc...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #27
obesity diabetescauses
when 23BMI34
risk ratio = 1.61
obesity hypertens...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #28
hypertension
chronic renal
diseasecauses
when systolic BB  140mmHg AND/O...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #29
CARRE risk factor database and predictive model
E. Kaldoudi, IUPESM WC2015, June 2015, slide #30
a partial view of the graph…
E. Kaldoudi, IUPESM WC2015, June 2015, slide #31
intuitive presentations for patients
work in progress
E. Kaldoudi, IUPESM WC2015, June 2015, slide #32
interactive risk prediction and planning
exercise
weight
blood pressure
b...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #33
awarenessengagementcontrol
understanding
knowledge
information
action, pa...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #34
health education
for the public
customization for
relevant and meaningful...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #35
to summarize…
general health information for the public
customized health...
E. Kaldoudi, IUPESM WC2015, June 2015, slide #36
health content
of the environment
via
life context descriptions &
partici...
acknowledgment
work funded under project CARRE
co-funded by the
European Commission under the
Information and Communicatio...
Contact
Eleni Kaldoudi
Associate Professor
School of Medicine
Democritus University of Thrace
Dragana, Alexandroupoli
6810...
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Empowering Patients through Information Technologies - WC2015 Keynote

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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.

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Empowering Patients through Information Technologies - WC2015 Keynote

  1. 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. 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. 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. 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. 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. 6. E. Kaldoudi, IUPESM WC2015, June 2015, slide #6 “how” input data processing delivery
  7. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 25. E. Kaldoudi, IUPESM WC2015, June 2015, slide #25 CARRE ontology published in NCBO BioPortal http://bioportal.bioontology.org/ontologies/CARRE
  26. 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. 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. 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. 29. E. Kaldoudi, IUPESM WC2015, June 2015, slide #29 CARRE risk factor database and predictive model
  30. 30. E. Kaldoudi, IUPESM WC2015, June 2015, slide #30 a partial view of the graph…
  31. 31. E. Kaldoudi, IUPESM WC2015, June 2015, slide #31 intuitive presentations for patients work in progress
  32. 32. E. Kaldoudi, IUPESM WC2015, June 2015, slide #32 interactive risk prediction and planning exercise weight blood pressure blood glucose work in progress
  33. 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. 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. 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. 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. 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. 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/

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