P o p u l a t i o n - b a s e d D i s e a s e - PowerPoint PPT Presentation

Bridge Health EUBIROD Network Meeting Hotel Archimede, Via dei Mille 19, Roma, Italy 23 rd -24 th November 2015 P o p u l a t i o n - b a s e d D i s e a s e R e g i s t r i e s Fabrizio Carinci Professor of Health Systems and Policy School of Health Sciences, University of Surrey f.carinci@surrey.ac.uk

Patient registry PARENT Joint Action Guidelines (1) http://patientregistries.eu/documents/10184/14613/Methodological+guidelines+and+recommendations+for+effjci ent+and+rational+governance+of+patient+registries/5bf3ea46-26ca-4d91-b459-47dce18a8846 „ . . . a n o r g a n i z e d s y s t e m t h a t c o l l e c t s , a n a l y s e s , a n d d i s s e mi n a t e s t h e d a t a a n d i n f o r ma t i o n o n a g r o u p o f p e o p l e d e fj n e d b y a p a r t i c u l a r d i s e a s e , c o n d i t i o n , e x p o s u r e , o r h e a l t h - r e l a t e d s e r v i c e , a n d t h a t s e r v e s a p r e d e t e r mi n e d s c i e n t i fj c , c l i n i c a l o r / a n d p u b l i c h e a l t h ( p o l i c y ) p u r p o s e s “ F a b r i z i o C a r i n c i

T ypes of Patient Registries PARENT Joint Action Guidelines (2) http://patientregistries.eu/documents/10184/14613/Methodological+guidelines+and+recommendations+for+effjci ent+and+rational+governance+of+patient+registries/5bf3ea46-26ca-4d91-b459-47dce18a8846 F a b r i z i o C a r i n c i

Disease registry PARENT Joint Action Guidelines (3) http://patientregistries.eu/documents/10184/14613/Methodological+guidelines+and+recommendations+for+effjci ent+and+rational+governance+of+patient+registries/5bf3ea46-26ca-4d91-b459-47dce18a8846 „ D i s e a s e o r c o n d i t i o n r e g i s t r i e s a r e d e fj n e d b y p a t i e n t s h a v i n g t h e s a me d i a g n o s i s , s u c h a s c y s t i c fj b r o s i s o r h e a r t f a i l u r e , o r t h e s a me g r o u p o f c o n d i t i o n s s u c h a s d i s a b i l i t y . A s a n e x a mp l e o f a n E U p r o j e c t / i n i t i a t i v e c o n c e r n i n g i mp r o v i n g d i s e a s e r e g i s t r i e s i n t e r ms o f d e fj n i n g p u r p o s e s , l e g a l c o n t e x t , s e ma n t i c a n d t e c h n i c a l a s p e c t s , E U B I R O D i s me n t i o n e d h e r e … . O v e r a l l , E U B I R O D c a n s e r v e a s a g o o d e x a mp l e a n d mo d e l t o b e r e - u s e d f o r o t h e r c h r o n i c d i s e a s e s a s w e l l “ . F a b r i z i o C a r i n c i

Population registry PARENT Joint Action Guidelines (4) http://patientregistries.eu/documents/10184/14613/Methodological+guidelines+and+recommendations+for+effjci ent+and+rational+governance+of+patient+registries/5bf3ea46-26ca-4d91-b459-47dce18a8846 „ . . . i s a r e g i s t r y t h a t i n t e n d s t o c o v e r a l l r e s i d e n t s i n a g i v e n g e o g r a p h i c a r e a w i t h i n a g i v e n t i me p e r i o d . T h e c o v e r a g e o f t h e s p e c i fj c r e g i s t r y ma y , h o w e v e r , b e i n c o mp l e t e , b u t i t i s n e v e r t h e l e s s a p o p u l a t i o n r e g i s t r y i f t h e a i m i s t o i n c l u d e a l l t h e i n d i v i d u a l s i n t h e t a r g e t p o p u l a t i o n . A p o p u l a t i o n i s d e fj n e d b y g e o g r a p h i c a l b o u n d a r i e s , b u t u s u a l l y o n l y r e s i d e n t s ( o r c i t i z e n s ) w i t h i n a g i v e n t i me p e r i o d a r e i n c l u d e d i n t h e d e fj n i t i o n . “ F a b r i z i o C a r i n c i

Population-based registries PARENT Joint Action Guidelines (5) http://patientregistries.eu/documents/10184/14613/Methodological+guidelines+and+recommendations+for+effjci ent+and+rational+governance+of+patient+registries/5bf3ea46-26ca-4d91-b459-47dce18a8846 „ T h e t e r m ' p o p u l a t i o n - b a s e d r e g i s t r y ” s h o u l d b e u s e d w h e n a l l p e r s o n s w i t h a g i v e n t r a i t , e x p o s u r e o r e v e n t , a r e i n t e n d e d t o b e i n c l u d e d i n t h e r e g i s t r y . I f t h e r e g i s t r y i n c l u d e s e v e r y o n e i n t h e p o p u l a t i o n ( e v e n t h e o l d e s t ) , i t b e c o me s a p o p u l a t i o n r e g i s t r y . I n t e n t i o n r a t h e r t h a n p e r f o r ma n c e d e fj n e s t h e t e r ms . A p o p u l a t i o n - b a s e d d i s e a s e r e g i s t r y a i ms a t i n c l u d i n g e v e r y o n e w i t h t h e d i s e a s e i n t h e p o p u l a t i o n , b e i t s e l f - r e p o r t e d , c l i n i c a l l y d i a g n o s e d o r d e t e c t e d a t s c r e e n i n g . P o p u l a t i o n a n d p o p u l a t i o n - b a s e d r e g i s t r i e s ma y b e f u r t h e r c l a s s i fj e d a s o f g o o d o r b a d q u a l i t y d e p e n d i n g o n c o v e r a g e o r o t h e r c h a r a c t e r i s t i c s “ F a b r i z i o C a r i n c i

Structure of an integrated diabetes register Carinci F, Di Iorio CT, Massi Benedetti M, Standardized information exchange in diabetes: integrated registries for governance, research and clinical practice, in Bruttomesso D, Grassi G (eds), T echnological Advancements in the Treatment of T ype 1 Diabetes, Front Diabetes, Basel, Karger, vol 24, 1-14, 2014. F a b r i z i o C a r i n c i

Why population-based disease registries? “Active” OUTCOMES Patients People (Centre) with INDICATORS DISEASE Catchment Numerator Area -------------------- Denominator Total Population (Region) DATA F a b r i z i o C a r i n c i

E s s e n t i a l l e v e l s o f h e a l t h i n f o r ma t i o n i n E u r o p e C a r i n c i F . H e a l t h P o l i c y . 2 0 1 5 A p r ; 1 1 9 ( 4 ) : 5 3 0 - 8 . R e c e n t l y , t h e E u r o p e a n C o mmi s s i o n c o o r d i n a t e d a d i s c u s s i o n b e t w e e n MS a n d E x p e r t N e t w o r k s o n h o w ( a n d w h e t h e r ) t o r e a l i z e t h e s y s t e m. T h e i d e a o f „ e s s e n t i a l l e v e l s o f h e a l t h i n f o r ma t i o n ” o r i g i n a t e d f r o m t h i s e x p e r i e n c e T h e c o n c e p t u a l f r a me w o r k p r o p o s e d i n t h i s p r e s e n t a t i o n i s a n e x t r a c t f r o m t h i s p a p e r F a b r i z i o C a r i n c i

E s s e n t i a l l e v e l s o f h e a l t h i n f o r ma t i o n i n E u r o p e C a r i n c i F . H e a l t h P o l i c y . 2 0 1 5 A p r ; 1 1 9 ( 4 ) : 5 3 0 - 8 . F a b r i z i o C a r i n c i

Bridge Health R e p l y t o c a l l : a c t i o n “ 2 . 1 . 3 . 3 . T o w a r d s a s u s t a i n a b l e h e a l t h mo n i t o r i n g a n d r e p o r t i n g s y s t e m” o f t h e p r i o r i t y a r e a 2 . 1 . 3 . A c t i o n s u n d e r t h e ma t i c p r i o r i t y 3 – C o n t r i b u t i n g t o i n n o v a t i v e , e ffjc i e n t a n d s u s t a i n a b l e h e a l t h s y s t e ms i n t h e Wo r k P r o g r a mme 2 0 1 4 o f t h e P u b l i c H e a l t h P r o g r a mme o f C o mmu n i t y a c t i o n i n t h e fj e l d o f h e a l t h ( 2 0 1 4 - 2 0 2 0 ) . F a b r i z i o C a r i n c i