Implementing Outcomes-based Healthcare Crowne Plaza Brussels - Le Pa lace www.eubirod.eu 18 th October 2018 www.hirs- research.eu/eubirod.html The approach to building a disease registry: the EUBIROD Project and the ICHOM Diabetes Standard Set Fabrizio Carinci T e c h n i c a l C o o r d i n a t o r o f t h e E U B I R O D N e t wo r k Adjunct Professor of Biostatistics, University of Bologna, Italy Visiting Professor, University of Surrey, UK fabrizio.carinci@unibo.it
Objectives Overview of outcomes measurement in diabetes and refmections upon the barriers and enablers to building a pan-European diabetes registry 2 F a b r i z i o C a r i n c i
Why do we need health information in Europe? To provide broader and faster access to an ever increasing amount of information of critical importance to researchers working in the public interest To make policy makers accountable for the results obtained by the EU legislation and National policies To evaluate adherence to evidence-based guidelines To set achievable targets for quality of care and outcomes, taking into account the costs and benefjts of different alternatives To share best practices and avoid common mistakes To benchmark the effect of local policies and health services organization against different alternatives, using standardized criteria To avoid drawing conclusions from random variation , which is more critical in countries that have a smaller population and a limited number of cases for any problem investigated 3 / 2 7 F a b r i z i o C a r i n c i
O E C D H e a l t h a t a G l a n c e 2 0 1 7 h t t p : / / w w w . o e c d - i l i b r a r y . o r g / s o c i a l - i s s u e s - m i g r a t i o n - h e a l t h / h e a l t h - a t - a - g l a n c e - 2 0 1 7 _ h e a l t h _ g l a n c e - 2 0 1 7 - e n Policies are assessed using information that is not available on a routine basis ! 4 / 2 7 F a b r i z i o C a r i n c i
OECD Health System Performance Framework 2015 5 / 2 7 F a b r i z i o C a r i n c i
Diabetes in Europe: which international comparisons are routinely available today? Certainly not enough to monitor action and planning of prevention measures and health care for people with diabetes in Europe General data on diabetes prevalence (total number of people in diabetes at a specifjc point in time), poor data on incidence (how many new cases per year) Few indicators calculated from administrative data sources (e.g. hospital data), prone to bias due to fjnancing mechanisms (e.g. DRGs) No indicators on intermediate and terminal outcomes (those that really matter for people with diabetes) 6 F a b r i z i o C a r i n c i
Prescription of hypertensive and Lower extremity amputations in diabetes, 2015 Source: OECD Health at a Glance 2017 7 F a b r i z i o C a r i n c i
Why do we need a EU infrastructure for diabetes information? To monitor actions and plan accordingly USING MORE GRANULAR DATA OF CLINICAL RELEVANCE Diabetes is a valid model for complex multidimensional and longitudinal monitoring of chronic diseases: General data on diabetes prevalence (total number of people in diabetes at a specifjc point in time), poor data on incidence (how many new cases per year) Summary results on selected indicators calculated from administrative data sources (e.g. hospital data), prone to bias due to fjnancing mechanisms (e.g. DRGs) No indicators on intermediate and terminal outcomes (those that really matter for people with diabetes) Does relevant information exist? YES,but is stored in different silos (networks) and/or dispersed at the national or even sub-national level! 8 / 2 7 F a b r i z i o C a r i n c i
BARRIER Diabetes Registers in Europe HIGH QUALITY INFORMATION … but... Heterogeneous Fragmented Heavily Regulated Serving local interests Skeptical about sustainability of regular international comparisons Hard to share data on a regular basis Mainly available in national language only 9 / 2 7 F a b r i z i o C a r i n c i
ENABLER PERSON CENTRED HEALTH SYSTEMS At the OECD Health Ministerial 2017, Health Ministers from around the globe: committed to realize person-centre health systems expressed their interest to measure person reported outcomes and costs for each individual with a specifjed target condition (fundamental prerequisite for Value-based Health Care) 1 0 / 2 7 F a b r i z i o C a r i n c i
What do we need to measure for person- centred value-based health care ? BARRIER QUALITY OF HEALTH COST CARE INDICATOR Numerator DATA -------------------- Denominator (LINKAGE) admission event contacts time 11 F a b r i z i o C a r i n c i
Structure of a population- ENABLER based disease register Allows collecting a range of measures in a rigorous manner! 12 F a b r i z i o C a r i n c i
But different types of models for data collection may bias the results... 13 F a b r i z i o C a r i n c i
Different data sources may lead to very different results... 14 F a b r i z i o C a r i n c i
15 F a b r i z i o C a r i n c i
Survey of diabetes data sources in Europe Source: EUBIROD Network 2017 Instrument: Questionnaire including structured items on: Description; Scope of information; Governance; Technical Infrastructure; Outputs. Data collection system: REDCap open source research server, hosted in Slovenia Timeframe: August-September 2017 Preliminary Taxonomy A. Population-based Registers. Croatia, Sweden, UK-Scotland B. National Audits and surveillance systems. Belgium, Germany, UK-England C. National databases for quality indicators. Israel, Latvia D. Different types and levels of data sources. Cyprus, Hungary, Israel, Italy, Malta, Poland, Romania, Slovenia How to merge approaches? 16 F a b r i z i o C a r i n c i
S h a r e d E v i d e n c e - b a s e d D i a b e t e s ENABLER I n f o r m a t i o n S y s t e m C a r i n c i e t a l , D i a b e t e s r e g i s t e r s a n d p r e v e n t i o n s t r a t e g i e s : t o w a r d s a n a c t i v e u s e o f h e a l t h i n f o r m a t i o n , D i a b e t e s R e s e a r c h a n d C l i n i c a l P r a c t i c e 7 4 ( 2 0 0 6 ) S 2 1 5 – S 2 1 9 17 F a b r i z i o C a r i n c i
EU BIRO and EUBIROD projects EU DG-SANCO co-funded public health projects BIRO project (2005-2009) “ t o p r o v i d e E u r o p e a n h e a l t h s y s t e ms wi t h a n a d h o c , e v i d e n c e a n d p o p u l a t i o n - b a s e d d i a b e t e s i n f o r ma t i o n s y s t e m” EUBIROD project (2008-2012) “ t o i mp l e me n t a s u s t a i n a b l e E u r o p e a n D i a b e t e s R e g i s t e r t h r o u g h t h e c o o r d i n a t i o n o f e x i s t i n g n a t i o n a l / r e g i o n a l f r a me wo r k s a n d t h e s y s t e ma t i c u s e o f t h e B I R O s y s t e m i n 2 0 E u r o p e a n c o u n t r i e s ” BRIDGE-HEALTH (2015-2017) T a s k 8 . 2 : “ t o p r o v i d e p r i v a c y - e n h a n c e d o p e n s o u r c e s o f t wa r e f o r s t a t i s t i c a l a n a l y s i s , d a t a e x c h a n g e , a n d a u t o ma t e d c a l c u l a t i o n o f i n d i c a t o r s , l o c a l l y a n d a t E U l e v e l , b a s e d o n t h e B I R O e x p e r i e n c e . ” 18 F a b r i z i o C a r i n c i
A lasting coalition for http://www.hirs-research.eu/eubirod.html brainstorming, debate, research and development projects! Coordinating Centre Joanneum Research, Austria International Diabetes Federation (IDF), Belgium Scientifjc Institute of Public Health, Belgium National Institute of Public Health, Croatia University of Zagreb, Croatia Ministry of Health, Cyprus Adult National Diabetes Register,Denmark University of Debrecen, Hungary Sharing: Ministry of Health, Israel Information Serectrix, Italy Best practices Ministry of Health, Latvia Tools University of Malta, Malta NOKLUS, Norway Methods Silesian University of Technology, Poland Creating Opportunities for: Telemedica Consulting, Romania Targeted Research Partnerships University of Ljubljana, Slovenia Direct Involvement with EU/International IDIBAPS, Spain Organizations Foundation for Care Information, The Netherlands Building together: University of Dundee, UK Global platform for diabetes monitoring University of Surrey, UK 19 F a b r i z i o C a r i n c i
Recommend
More recommend
