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

SLIDE 1

P

p

u l a t i

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

Bridge Health EUBIROD Network Meeting Hotel Archimede, Via dei Mille 19, Roma, Italy 23rd-24th November 2015

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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

r

g a n i z e d s y s t e m t h a t c

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

r

ma t i

n
n

a g r

u

p

f

p e

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

n

d i t i

n

, e x p

s

u r e ,

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

r

/ a n d p u b l i c h e a l t h ( p

l

i c y ) p u r p

s

e s “

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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

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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

r

c

n

d i t i

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

s

i s , s u c h a s c y s t i c fj b r

s

i s

r

h e a r t f a i l u r e ,

r

t h e s a me g r

u

p

f

c

n

d i t i

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

f

a n E U p r

j

e c t / i n i t i a t i v e c

n

c e r n i n g i mp r

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

f

d e fj n i n g p u r p

s

e s , l e g a l c

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

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

d

e x a mp l e a n d mo d e l t

b

e r e

u

s e d f

r
t

h e r c h r

n

i c d i s e a s e s a s w e l l “ .

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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

c
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

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

d

. T h e c

v

e r a g e

f

t h e s p e c i fj c r e g i s t r y ma y , h

w

e v e r , b e i n c

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

p

u l a t i

n

r e g i s t r y i f t h e a i m i s t

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

p

u l a t i

n

. A p

p

u l a t i

n

i s d e fj n e d b y g e

g

r a p h i c a l b

u

n d a r i e s , b u t u s u a l l y

n

l y r e s i d e n t s (

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

d

a r e i n c l u d e d i n t h e d e fj n i t i

n

. “

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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

p

u l a t i

n
b

a s e d r e g i s t r y ” s h

u

l d b e u s e d w h e n a l l p e r s

n

s w i t h a g i v e n t r a i t , e x p

s

u r e

r

e v e n t , a r e i n t e n d e d t

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

n

e i n t h e p

p

u l a t i

n

( e v e n t h e

l

d e s t ) , i t b e c

me

s a p

p

u l a t i

n

r e g i s t r y . I n t e n t i

n

r a t h e r t h a n p e r f

r

ma n c e d e fj n e s t h e t e r ms . A p

p

u l a t i

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

n

e w i t h t h e d i s e a s e i n t h e p

p

u l a t i

n

, b e i t s e l f

r

e p

r

t e d , c l i n i c a l l y d i a g n

s

e d

r

d e t e c t e d a t s c r e e n i n g . P

p

u l a t i

n

a n d p

p

u l a t i

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

f

g

d
r

b a d q u a l i t y d e p e n d i n g

n

c

v

e r a g e

r
t

h e r c h a r a c t e r i s t i c s “

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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.

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Why population-based disease registries?

Numerator

Denominator

Total Population (Region) Catchment Area People with DISEASE

DATA

INDICATORS

OUTCOMES

“Active” Patients (Centre)

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a r i n c i

E s s e n t i a l l e v e l s

f

h e a l t h i n f

r

ma t i

n

i n E u r

p

e

C a r i n c i F . H e a l t h P

l

i c y . 2 1 5 A p r ; 1 1 9 ( 4 ) : 5 3

8

.

R e c e n t l y , t h e E u r

p

e a n C

mmi

s s i

n

c

r

d i n a t e d a d i s c u s s i

n

b e t w e e n MS a n d E x p e r t N e t w

r

k s

n

h

w

( a n d w h e t h e r ) t

r

e a l i z e t h e s y s t e m. T h e i d e a

f

„ e s s e n t i a l l e v e l s

f

h e a l t h i n f

r

ma t i

n

”

r

i g i n a t e d f r

m

t h i s e x p e r i e n c e T h e c

n

c e p t u a l f r a me w

r

k p r

p
s

e d i n t h i s p r e s e n t a t i

n

i s a n e x t r a c t f r

m

t h i s p a p e r

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a r i n c i

E s s e n t i a l l e v e l s

f

h e a l t h i n f

r

ma t i

n

i n E u r

p

e

C a r i n c i F . H e a l t h P

l

i c y . 2 1 5 A p r ; 1 1 9 ( 4 ) : 5 3

8

.

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a r i n c i

Bridge Health

R e p l y t

c

a l l : a c t i

n

“ 2 . 1 . 3 . 3 . T

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

r

i n g a n d r e p

r

t i n g s y s t e m”

f

t h e p r i

r

i t y a r e a 2 . 1 . 3 . A c t i

n

s u n d e r t h e ma t i c p r i

r

i t y 3 – C

n

t r i b u t i n g t

i

n n

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

g

r a mme 2 1 4

f

t h e P u b l i c H e a l t h P r

g

r a mme

f

C

mmu

n i t y a c t i

n

i n t h e fj e l d

f

h e a l t h ( 2 1 4

2

2 ) .

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a r i n c i

Aims

U s i n g t h e c

mp

r e h e n s i v e e x p e r i e n c e a n d a s s u r i n g a k n

w

l e d g e t r a n s f e r f r

m

p a s t h e a l t h a n d r e s e a r c h f r a me w

r

k s :

 t

w
r

k t

w

a r d s a n E u r

p

e a n h e a l t h i n f

r

ma t i

n

( E U

H

I ) a n d d a t a g e n e r a t i

n

n e t w

r

k s c

v

e r i n g ma j

r

E U h e a l t h p

l

i c y a r e a s :

 c

mp

r e h e n s i v e , i n t e g r a t e d a n d s u s t a i n a b l e

 s

u p p

r

t i n g e v i d e n c e

b

a s e d h e a l t h p

l

i c y a n d r e s e a r c h f

r

t h e E U a n d Me mb e r S t a t e s

 p

r

v

i d i n g b l u e p r i n t s a n d /

r

c

n

c e p t s

f

b u i l d i n g b l

c

k s f

r

a f u t u r e E U

H

I r e s e a r c h i n f r a s t r u c t u r e c

n

s

r

t i u m ( E R I C

H

I )

 t

b

r i d g e k e y E U p r

j

e c t s i n d

ma

i n s

f

p

p

u l a t i

n

a n d h e a l t h s y s t e m mo n i t

r

i n g a n d i n d i c a t

r

d e v e l

p

me n t , h e a l t h e x a mi n a t i

n

s u r v e y s , e n v i r

n

me n t a n d h e a l t h , p

p

u l a t i

n

i n j u r y a n d d i s e a s e r e g i s t r i e s , c l i n i c a l a n d a d mi n i s t r a t i v e h e a l t h d a t a c

l

l e c t i

n

s y s t e ms a n d me t h

d

s

f

h e a l t h s y s t e m mo n i t

r

i n g a n d e v a l u a t i

n

.

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Generic objectives (1)

 e

n s u r e s u s t a i n a b i l i t y

f

k e y h e a l t h i n f

r

ma t i

n

a c t i v i t i e s t h a t h a v e b e e n r u n u n d e r t h e p a s t E U

h

e a l t h a n d r e s e a r c h f r a me w

r

k p r

g

r a mme s a n d e n h a n c e s y n e r g y a mo n g t h e s e a c t i v i t i e s ;

 e

n h a n c e t h e t r a n s f e r a b i l i t y

f

h e a l t h i n f

r

ma t i

n

a n d d a t a f

r

p

l

i c y a n d i mp r

v

e t h e u t i l i t y a n d u s e

f

d a t a a n d i n d i c a t

r

s f

r

s t a k e h

l

d e r s i n p

l

i c y ma k i n g , p u b l i c h e a l t h s u r v e i l l a n c e a n d h e a l t h c a r e

 r

e d u c e h e a l t h i n f

r

ma t i

n

i n e q u a l i t y w i t h i n t h e E U a n d w i t h i n MS s

 e

n h a n c e i n f

r

ma t i

n
n

r e g i

n

a l v a r i a t i

n

s

f

i n d i c a t

r

s ,

n

i n e q u a l i t i e s a n d

n

s p e c i fj c p

p

u l a t i

n

g r

u

p s s u c h a s c h i l d r e n a n d t h e e l d e r l y

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Generic objectives (2)

 d

e v e l

p

a b l u e p r i n t f

r

a s u s t a i n a b l e a n d i n t e g r a t e d E U H e a l t h i n f

r

ma t i

n

s y s t e m b y d e v e l

p

i n g c

mmo

n me t h

d

s :

 s

t a n d a r d i z i n g t h e c

l

l e c t i

n

a n d e x c h a n g e

f

h e a l t h i n f

r

ma t i

n

( i n c l u d i n g me t a

d

a t a , r

l

e

f

d i fg e r e n t d a t a s

u

r c e s ) w i t h i n a n d b e t w e e n d

ma

i n s , b e t w e e n MS s

 e

n s u r i n g d a t a q u a l i t y , i n c l u d i n g p r

c

e d u r e s f

r

i n t e r n a l a n d e x t e r n a l v a l i d a t i

n
f

h e a l t h i n d i c a t

r

s

 u

n d e r t a k i n g p r i

r

i t y s e t t i n g e x e r c i s e s f

r

h e a l t h i n f

r

ma t i

n

 a

d d r e s s i n g e t h i c a l a n d l e g a l i s s u e s a s s

c

i a t e d w i t h t h e c

l

l e c t i

n

a n d u s e

f

h e a l t h d a t a w i t h i n MS s a n d t h e E U .

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Structure

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EUBIROD duties

WP 8 ( I S S ) M1 2 , M2 4 : 2 E U B I R O D N e t w

r

k Me e t i n g s M1 8 ( D r a f t )

M3

( F i n a l ) : B l u e p r i n t

f
p

e n s

u

r c e s

f

t w a r e p l a t f

r

m f

r

p

p

u l a t i

n
b

a s e d c h r

n

i c d i s e a s e s r e g i s t r i e s , b a s e d

n

t h e B I R O e x p e r i e n c e ( U N I T O V ) M1 8 ( D r a f t )

M3

( F i n a l ) : Ma n u a l

f

r e q u i r e me n t s a n d t e c h n i c a l s p e c i fj c a t i

n

s f

r

u s e r s a n d p r

g

r a mme r s ( U N I T O V ) WP 1 ( I A C S ) M1 8 : 1 P r i v a c y A s s e s s me n t Me e t i n g M2 4 : T e c h n i c a l ma n u a l c h a p t e r

n

e t h i c a l a n d l e g a l i s s u e s WP 1 1 ( T H L ) M3 P r i v a c y i mp a c t a s s e s s me n t . A s s e s s me n t

f

l e g a l i s s u e s r e l a t e d t

t

h e a p p r

a

c h e s : c

n

t r i b u t i

n

t

t

h e b l u e p r i n t . (THL)

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Thanks for your attention Questions..

Guildhall clock, Guildford, Surrey, UK