This document discusses open data in healthcare. It provides background on open health data initiatives in several European countries like the UK, France, Portugal, and Italy. It notes both opportunities and challenges with opening up health data, including issues around governance, strategy, and privacy. The document advocates for a patient-centered approach and emphasizes the potential for open health data to empower citizens and fuel innovation when various stakeholders collaborate.

1. O P E N D ATA & H E A LT H
F O O D F O R T H O U G H T S
M A T T E O B R U N A T I
E P S I P L A T F O R M C O R R E S P O N D A N T F O R I TA LY
#ePSI #opendataitaly

2. W H AT I S E P S I P L AT F O R M ?
Funded by the European Commission
Europe's One-Stop Shop on PSI Re-use
• News, happenings
• Best practices
• Engaging the community
European Public Sector Information Platform
E P S I P L AT F O R M . E U

3. H E A LT H A N D D ATA : A L O N G S T O RY
H T T P : / / V I S U A L O O P. C O M / 1 7 8 0 8 / D ATA - V I Z - N E W S - 4 3

4. S O M E E U I N S I G H T S

5. G 8 O P E N D ATA C H A R T E R
H T T P : / / L ATA . O R G . LV / W P - C O N T E N T / C O N F / AT V E RT I E D AT I / O P E N % 2 0 D ATA
% 2 0 P O L I C Y % 2 0 - % 2 0 L ATA % 2 0 - % 2 0 D R I Z Z I . P D F

6. O P E N D ATA B A R O M E T E R
O C T O B E R 2 0 1 3
H T T P : / / W W W. O P E N D ATA R E S E A R C H . O R G / D L / O D B 2 0 1 3 / O P E N - D ATA -
B A R O M E T E R - 2 0 1 3 - G L O B A L - R E P O RT. P D F

7. I TA LY & H E A LT H A S O P E N D ATA
H T T P : / / T H E O D I . G I T H U B . I O / O P E N - D ATA - B A R O M E T E R - V I Z /

8. O P E N D ATA & E C O N O M I C VA L U E
M C K I N S E Y
E N D O F
2 0 1 3
H T T P : / / W W W. M C K I N S E Y. C O M / I N S I G H T S / B U S I N E S S _ T E C H N O L O G Y /
O P E N _ D ATA _ U N L O C K I N G _ I N N O VAT I O N _ A N D _ P E R F O R M A N C E _ W I T H _ L I Q U I D _ I N F O R M AT I O N

9. W H AT ’ S G O I N G O N
H T T P : / / E C . E U R O PA . E U / H E A LT H / S T R AT E G Y / D O C S /
I N V E S T I N G _ I N _ H E A LT H _ I N F O G R A P H _ E N . P D F

10. S O M E A C T I O N S F R O M T H E T O P
epSOS (European Patient Summary Open Services)
W W W. E P S I P L AT F O R M . E U / C O N T E N T / O P E N - H E A LT H - C A R E - D ATA
Patient Summary
individual’s ePrescription

11. W H AT ’ S H E A LT H D ATA ?

12. - Public spending and public policy on health care
- Performance indicators of individual health care
providers
- General, anonymised information on population
health statistics
- Specific information about individuals (e.g.
patient records)
W W W. E P S I P L AT F O R M . E U / C O N T E N T / O P E N - H E A LT H - C A R E - D ATA

13. - Public spending and public policy on health care
- Performance indicators of individual health care
providers
- General, anonymised information on population
health statistics
- Specific information about individuals (e.g.
patient records)

14. I T ’ S A N E C O S Y S T E M O F D ATA
H T T P : / / I M A G E S . T H E G O V L A B . O R G / W O R D P R E S S / W P - C O N T E N T / U P L O A D S /
2 0 1 4 / 0 6 / N H S - F U L L - R E P O RT. P D F

15. A V E RY B I G E C O S Y S T E M :
N O T O N LY O P E N G O V E R N M E N T D ATA

16. D ATA E C O S Y S T E M - > D ATA M A S H U P
health data (e.g. occurrence of certain diseases)
+
environmental data (e.g. measurement of air quality)
+
location data
=
R E D U C E P U B L I C H E A LT H R I S K

17. U K E X P E R I E N C E O N O P E N H E A LT H

18. A G O O D
S TA R T
H T T P : / / I M A G E S . T H E G O V L A B . O R G / W O R D P R E S S / W P - C O N T E N T / U P L O A D S / 2 0 1 4 / 0 6 / N H S - F U L L -
R E P O RT. P D F

19. N H S R O A D M A P O N O P E N D ATA
2005 2007 2011 2012 2013 2014
NHS
Information
Centre
NHS
Choice
Open Data
White Paper
Open Data
Health and
Social Care Act
The Power of Information
10 year plan - IT Strategy
CareConnect Pilot
( feedback )
Memorandum of
Understanding with US

20. N H S O P E N D ATA

21. N H S O P E N D ATA

22. N H S O P E N D ATA

23. 6 VA L U E P R O P O S I T I O N S

24. I T ’ S
A P R O C E S S
A C O N C E P T U A L
F R A M E W O R K

25. I T ’ S N O T S O S I M P L E

26. S O M E T I M E S H A P P E N S
H T T P : / / W W W. T H E G U A R D I A N . C O M / C O M M E N T I S F R E E / 2 0 1 4 / F E B / 2 8 / C A R E - D ATA -
I S - I N - C H A O S

27. H T T P : / / W W W. C D E . O R G . U K /
S O M E T I M E S H A P P E N S

28. F R A N C E E X P E R I E N C E O N O P E N H E A LT H

29. H T T P : / / W W W. S C O P E S A N T E . F R / # /

30. H T T P : / / D ATAV E Y E S . C O M / # ! / E N / P R O J E C T S / S C O P E - S A N T E

31. D E M A N D D R I V E N P R O C E S S
W W W. E P S I P L AT F O R M . E U / C O N T E N T / E TA L A B - P U B L I S H E S - F R E N C H - D I R E C T O RY-
P U B L I C - H E A LT H - D ATA - A N D - L A U N C H E S - P U B L I C - O N L I N E - C O N S U LTAT I O N

32. O P E N D ATA E N G A G E M E N T
http://www.opendataimpacts.net/engagement/

33. P O R T U G A L

34. H E A LT H D A S H B O A R D
http://www.dgs.pt/dashboard/

35. I TA LY N E X T S T E P S ,
F R O M T H E T O P

38. S O M E
P R O B L E M S
H T T P : / / W W W. A G E N D A D I G I TA L E . E U / E G O V / 9 0 2 _ A L - V I A - I - P I A N I - R E G I O N A L I - P E R -
I L - FA S C I C O L O - S A N I TA R I O - E L E T T R O N I C O . H T M
G O V E R N A N C E ?

39. S T R AT E G Y ?
H T T P S : / / G R O U P S . G O O G L E . C O M / D / M S G / S PA G H E T T I O P E N D ATA / M S D N S P J P 9 Q G /
G J M J R 9 K A 5 _ G J
“Dati Ospedali ... ma in CC-ND-NC” - march 2014

40. S T R AT E G Y ?
dati.salute.gov.it

41. S T O RY T E L L I N G O N R E C O R D ?
H T T P : / / W W W. S T O R E P R O J E C T. E U /

42. H A C K I N G T H E S T O RY T E L L I N G ,
P U B L I S H I N G A L L Y O U R D ATA A S
O P E N D ATA
H T T P : / / W W W. A RT I S O P E N S O U R C E . N E T / N E T W O R K / A RT I S O P E N S O U R C E /
2 0 1 3 / 0 4 / 1 3 / L A - C U R A - A N - O P E N - S O U R C E - C U R E - F O R - C A N C E R - AT- T E D M E D /

43. T O M A K E U S M O R E H U M A N ,
W E A R E A L L C O N N E C T E D

44. S O M E T I P S F R O M
T H E S O C I E T Y

45. M AY 2 0 1 4 : A P P L E H E A LT H K I T
H T T P S : / / D E V E L O P E R . A P P L E . C O M / H E A LT H K I T /

46. J U N E 2 0 1 4 : G O O G L E F I T
H T T P : / / W W W. F O R B E S . C O M / S I T E S / PA R M Y O L S O N / 2 0 1 4 / 0 6 / 1 2 / E X C L U S I V E -
G O O G L E - T O - L A U N C H - H E A LT H - S E R V I C E - G O O G L E - F I T- AT- D E V E L O P E R S -
C O N F E R E N C E /

47. W H O H A S T H E D ATA ?
Public sector
actor
Single person
on its own
device
Private sector
actor
A new online
service as
intermediator

48. I G N O R E D ATA , F O C U S O N P O W E R
H T T P : / / M AT H B A B E . O R G / 2 0 1 4 / 0 5 / 2 0 / I G N O R E - D ATA - F O C U S - O N - P O W E R /

49. T H E P O W E R I S W H E R E T H E D ATA I S N ’ T
H T T P : / / M AT H B A B E . O R G / 2 0 1 4 / 0 5 / 2 0 / I G N O R E - D ATA - F O C U S - O N - P O W E R /

50. 2010
H T T P : / / W E B L O G S K Y. C O M / 2 0 1 0 / 0 5 / 0 2 / P R O J E C T- V R M - A N D - E - PAT I E N T S /

51. P R O V I D E R - C E N T E R E D V S
PAT I E N T - C E N T E R E D
H T T P S : / / B L O G S . L AW. H A R VA R D . E D U / V R M / 2 0 1 1 / 0 4 / 2 2 / PAT I E N T- D R I V E N - H E A LT H -
C A R E /

52. T H E N E T I S A E N A B L E R
P L AT F O R M
F O R PA R T I C I PAT I O N A N D
C O L L A B O R AT I O N

53. T O WA R D S A K N O W L E D G E
C O M M O N S I N H E A LT H ?
H T T P : / / W W W. N E S TA . O R G . U K / S I T E S / D E FA U LT / F I L E S /
D O C T O R _ K N O W _ A _ K N O W L E D G E _ C O M M O N S _ I N _ H E A LT H . P D F

54. PAT I E N T I S N O T A T H I R D P E R S O N
W O R D
E PAT I E N T D AV E . C O M / 2 0 1 1 / 0 4 / 1 2 / L E T- PAT I E N T S - H E L P - R O C K I N - T H E - E - PAT I E N T-
W O R L D - AT- T E D X - M A A S T R I C H T /
T H E Y E A R O F PAT I E N T S R I S I N G

55. W E A R E B U I L D I N G O U R
S O C I E T Y T O G E T H E R ,
W I T H O U T P E R M I S S I O N
#ePSI #opendataitaly #hackingsociety
W E A R E N O T O N LY PA , C I T I Z E N S , A N D C O M PA N I E S
F E E D B A C K / C R O W D S O U R C I N G

56. H T T P : / / M A K E . O P E N D ATA . C H / W I K I / P R O J E C T: O P E N M E D S E N S O R
W E H AV E S TA R T E D …

57. N H S + C O M M U N I T Y, + C I T I Z E N S ,
= W E
H T T P : / / N H S H A C K D AY. C O M /

58. 7 0 P E R C E N T O F Y O U R H E A LT H H A S N O T H I N G T O
D O W I T H Y O U R G E N E T I C S O R P E R S O N A L P R O F I L E .
!
I T H A S T O D O W I T H C O N T E X T
H T T P : / / W W W. W I R E D . C O . U K / N E W S / A R C H I V E / 2 0 1 4 - 0 6 / 1 4 / F O U N D E R S - F O R U M -
H E A LT H

59. I N T E R E S T I N G E V E N T I N U K
H T T P : / / W W W. E V E N T B R I T E . C O . U K / E /
H E A LT H - I N - N U M B E R S - J U LY- 3 - O P E N - D ATA -
I N - H E A LT H C A R E - T I C K E T S - 1 1 8 1 6 4 6 8 3 7 5

60. T H A N K S
#ePSI #opendataitaly
#opensanità #opendata
http://www.slideshare.net/EugeneBorukhovich/open-health-data-qualitative-overview
M O R E R E S O U R C E S