CARRE project presentation - November 2013
CARRE is an EU FP7-ICT funded project with the goal to provide innovative means for the management of comorbidities (multiple co-occurring medical conditions), especially in the case of chronic cardiac and renal disease patients or persons with increased risk of such conditions.
2. CARRE
comorbidity management
via empowerment and
shared informed decision:
understanding nature of comorbidity
informed estimation of disease
progression
FP7-ICT-2013-611140
STREP: 6 partners from 4 EU countries
duration: Nov 2013 – Oct 2016
budget: 3,210,470€
EC contribution: 2.573,755€
personalized alerting,
planning, education
3. motivation
facts:
½ of all chronic patients present comorbidities
only a few overall management guidelines exist
patients receive fragmented, disease specific care
current research on comorbidities management
suggests that improved management of comorbid patients
may result via:
educational and empowering interventions
shared decision support
4. medical domain
chronic cardiorenal disease and comorbidities
simultaneous (causal) dysfunction of kidney and heart
diabetes and/or hypertension common underlying causes
a number of other serious comorbidities often present
nephrogenic anemia, renal osteodystrophy, malnutrition,
blindness, neuropathy, severe atherosclerosis,
cardiovascular episodes, and eventually
end-stage renal disease and/or heart failure,
and death
deterioration to end stage renal/heart disease is
life threatening, irreversible and expensive to manage
5. 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
6. Dr. D. O‘ Donoghue,
UK's National Clinical Director for Kidney Care (2008):
“We can count the cost of kidney disease in financial terms,
but the impact on the lives of patients as a result of late identification
and diagnosis is incalculable.
In the UK, dialysis alone accounts for 2% of the total
NHS budget (=150 billion €) and this is projected to double over the
next five years.
In comparison, the cost of implementing CKD
prevention strategies can be modest”.
http://www.medicalnewstoday.com/releases/99428.php
7. cardiorenal disease & comorbidities
of major importance
early detection
prevent
aggressive management
preventive progression to
end-stage cardiorenal disease
via
lifestyle and diet management
public health education
monitoring and adherence to therapy
integrated management of comorbidities
detect
manage
8. foster understanding of comorbid condition
CARRE
approach
calculate informed comorbidity progression
compile personalized empowerment services
support shared informed decision and
integrated management
9. data interlinking and clustering for
personalized cardio-renal
disease and comorbidities model
clinical/medical
evidence
personal
monitoring data
determine
determine
current
personal
medical data
current
evidence
status of patient
on disease
medical scientific
literature
comorbidities
patient
educational
material
social media
presence
personal
information
Linked Data Cloud
shifting the focus towards
personalized comorbidity management
medical
evidence
12. work plan
1st year:
analysis and modeling
analysis, design, model & ontology,
initialization of RTD tools design and development
2nd year: main technological research and development
data harvesting, model/RDF population,
system visual interface, DSS infrastructure
testing
3rd year: enhancements, deployment & validation
advanced analytics, integrated services, pilots,
evaluation, implications
strong user involvement in all phases of RTD
a clear task-deliverable correspondance
13. 2nd year
1st year
milestones
M03 MS1: project successfully initiated
M12 MS2: a comprehensive CARRE information model
has been developed – 1st draft of RDF ready
M14 MS3: a working CARRE RDF scheme and ontology
have been produced
M18 MS4: data aggregators are efficiently working
3rd year
M24 MS5: visual interface to the RDF store is completed
M30 MS6: service environment integration has produced
a first working prototype
M36 MS7: project successfully completed
14. disseminate & exploit
main focus during
RTD core
of the
project
the entire lifetime
of the project and beyond
(not just in the end!!)
use & disseminate
“wrapper” channel
Figure adapted from: SCUBEICT, HAGRID, and IST_BONUS project
consortia, “Training Guide: Getting Started
with EU ICT Research, SCUBEICT, EU, September 2009 (p. 48)
15. target user groups
citizens
• cardiorenal patient
• healthy at risk
• care giver
professionals
R&D
• medical doctors
• insurance company
• healthcare system
• researchers
• industry, SMEs
• standardization
17. management
structure
EC
Project Officer
Project Coordinator PC
(Project Manager PM)
Experts
Advisory Board
WP1
Leader
Task Leaders
Task Leaders
Task Teams
Task Teams
General Assembly
WP2
Leader
Task Leaders
Task Leaders
Task Teams
Task Teams
WP3
Leader
Task Leaders
Task Leaders
Task Teams
Task Teams
Patients
Advisory Board
…
…
WP8
Leader
Task Leaders
Task Leaders
Task Teams
Task Teams
18. gender balance in CARRE
Coordinator and Project Manager are both women
WP leaders: 50% representation of both genders
Task leaders: 55% representation of women
Team Leaders and GA: 1/3 female representation
Key team members: 1/3 female representation
19. CARRE partners
Democritus University of Thrace (Greece)
coordination, user-driven analysis, pilot deployment, evaluation
The Open University (United Kingdom)
ontology development, semantic interlinking
University of Bedfordshire (United Kingdom)
visual analytics & data harvesting
Vilnius University Hospital Santariškių Klinikos (Lithuania)
user-driven analysis, pilot deployment, evaluation
Kaunas University of Technology (Lithuania)
sensors, data aggregators
Industrial Research Institute for Automation and Measurements (Poland)
decision support, systems security and data privacy
20. contact
Coordinator
General Assembly
Eleni Kaldoudi
DUTH
Eleni Kaldoudi
kaldoudi@med.duth.gr
OU
John Domingue
john.domingue@open.ac.uk
BED
Enjie Liu
Enjie.Liu@beds.ac.uk
VULSK
Domantas Stundys
Domantas.Stundys@santa.lt
KTU
Prof. Arunas Lukosevicius
arunas.lukosevicius@ktu.lt
PIAP
Roman Szewczyk
rszewczyk@piap.pl
Associate Professor
Dept. of Medicine
School of Health Sciences
Democritus University of Thrace
Dragana, Alexandroupoli
68100 Greece
Tel: +302551030329
Email: kaldoudi@med.duth.gr
Email: carre@med.duth.gr
21. CARRE
Project co-funded by the
European Commission under the
Information and Communication Technologies (ICT)
7th Framework Programme
No. FP7-ICT-2013-611140
Editor's Notes
CARRE is a Specific Targeted Research Project addressing the ICT theme 5.1 on personalized health, active ageing and independent living.
CARRE is an EU FP7-ICT funded project with the goal to provide innovative means for the management of comorbidities (multiple co-occurring medical conditions), especially in the case of chronic cardiac and renal disease patients or persons with increased risk of such conditions. Sources of medical and other knowledge will be semantically linked with sensor outputs to provide clinical information personalised to the individual patient, so as to be able to track the progression and interactions of comorbid conditions. Visual analytics will be employed so that patients and clinicians will be able to visualise, understand and interact with this linked knowledge and also take advantage of personalised empowerment services supported by a dedicated decision support system.The ultimate goal is to provide the means for patients with comorbidities to take an active role in care processes, including self-care and shared decision-making, and also to support medical professionals in understanding and treating comorbidities via an integrative approach.
Comorbidity refers to the presence of one or more disorders in addition to a primary disease or disorder (either independently, or as a consequence of the primary condition or otherwise related). As approximately half of all patients with chronic conditions, even in a nonelderly population, have comorbidities, comorbidity management is a hot topic in current medical literature. When addressing disease in the presence of comorbidities, each different medical condition the patient presents should not be viewed independently, but a “patient as a whole” view approach should be followed. This places an emphasis on and extra burden of dealing successfully with all associations, interactions, co-dependencies, implications, adverse events, etc. that occur between different conditions co-presenting at the same patient at the same time, as well as between the different treatment regimens these conditions involve.
One common case of comorbidities is the chronic cardiorenal disease, which is the condition characterized by simultaneous kidney and heart disease while the primarily failing organ may be either the heart or the kidney. Very often the dysfunction occurs when the failing organ precipitates the failure of the other. The cardiorenal patient (or the person at risk of this condition) presents an interesting case example for addressing and demonstrating novel patient empowerment services for personalized disease & comorbidities management and prevention for a number of reasons as chronic cardiorenal disease has an increasing incidence and a number of serious (and of increasing incidence) comorbidities. Current studies estimate that 9-16% of the overall population is at risk or at the onset of chronic renal disease, while chronic heart failure amounts to 1-2% of total healthcare costs and end-stage renal disease for more than 2% of total healthcare costs (in the developed world). One of the most important aspects of cardiorenal disease and comorbidities diagnosis and treatment is early detection and aggressive management of underlying causes. Preventing progression to end stage renal and cardiac deficiency may improve quality of life and help save health care costs. Prevention of the disease includes: lifestyle modification (controlling obesity, diabetes and hypertension), public-health education for reduction of excessive bodyweight, regular exercise, and dietary approaches, control of hypertension, dietary protein restriction and blood-pressure control, proteinuria management, dyslipidaemia management and smoking cessation. Delaying disease progression is crucial and must include patient education and aggressive treatment and management of chronic cardiorenal disease and its comorbidities. However, effective implementation of such strategies will only come when both the general public and the health care professionals community work together towards public awareness and lifestyle management on a personal basis and following an integrated care approach.
Current studies estimate that 9-16% of the overall population is at risk or at the onset of chronic renal disease, while chronic heart failure amounts to 1-2% of total healthcare costs and end-stage renal disease for more than 2% of total healthcare costs (in the developed world).
One of the most important aspects of cardiorenal disease and comorbidities diagnosis and treatment is early detection and aggressive management of underlying causes. Preventing progression to end stage renal and cardiac deficiency may improve quality of life and help save health care costs. Prevention of the disease includes: lifestyle modification (controlling obesity, diabetes and hypertension), public-health education for reduction of excessive bodyweight, regular exercise, and dietary approaches, control of hypertension, dietary protein restriction and blood-pressure control, proteinuria management, dyslipidaemia management and smoking cessation. Delaying disease progression is crucial and must include patient education and aggressive treatment and management of chronic cardiorenal disease and its comorbidities. However, effective implementation of such strategies will only come when both the general public and the health care professionals community work together towards public awareness and lifestyle management on a personal basis and following an integrated care approach.
CARRE aims to innovate towards a service environment for providing personalized empowerment and shared decision support services for cardiorenal disease comorbidities.
CARRE aims at creating a dynamic cross referencing of semantically related personalized and evidence based related data, including: medical ground knowledge up-to-date medical evidence and personal patient data in order to create a personalized model of the disease and comorbidities progression pathways and trajectories.
Major expected technological breakthroughs include:an ontology and schema for the description of comorbidities management (in the case of cardiorenal disease and comorbidities); data aggregators for integration of heterogeneous sources of information, such as medical evidence, personal data (including dynamic sensor data), medical information and personal disposition & lifestyle; text analysis tools to semantically annotate and extract relevant metadata from unstructured sources (medical evidence, social media); generic aggregator technology to harvest semantic information from structured data sources as listed above (e.g. personal sensors, educational content items); linked data technologies for semantic data interlinking, and enrichment;tools and infrastructure for large scale processing of aggregated data for visual analytics mentioned above;data/model driven decision support systems to build shared decision support services for the patient and the medical professional based on the personalized comorbidities model of the patient.
Research work in CARRE is organized in 3 yearly phases. The first year is devoted mainly to domain analysis and modeling, including design of software components and initialization of research development. During the second year most of technological innovation is expected to occur, including data harvesting and interlinking, visual analytics and decision support system infrastructure. The last year of the project is expected to use all the above to compile and evaluate patient empowerment and shared decision support services for the chronic cardiorenal disease. The overall strategy of the work plan revolves around a strong end-user involvement in all phases of research and development and exhibits a clear task-deliverable correspondence.