CARRE presentation Nov 2013
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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.
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CARRE presentation Nov 2013
- 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
- 10. S&T methodology visual analytics sensors data aggregators semantic linking decision support systems
- 11. outcomes dynamic cardiorenal comorbidities model interactive visualization of the model data aggregators for integration of heterogeneous sources patient empowerment & shared decision support services data/model driven decision support system
- 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
- 16. exploitation technology transfer via clustering technology implementation plan customer awareness
- 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.