Own your data. The document discusses owning personal health data and using a platform called DATA for GOOD that would allow citizens to control their own data. It notes that currently data is siloed in different organizations and citizens have lost control and visibility. The DATA for GOOD platform aims to give citizens easy, secure access and control over their data while enabling safe and transparent data sharing and insights with companies and researchers.

1. ONLINE
MORGENBOOSTER:
The New Data Economy:
Own Your Data
Claus F. Nielsen
Pizza guy, Tisvildeleje
Denmark, the red TOMATO

3. Claus F.
Nielsen
Co-founder, DATA for
GOOD Foundation

4. @DeadpoolNet
@datafgood

8. Health costs per capita Denmark
$5,183
Health costs per capita
US $10,209!!

10. Digital divorce >2-5 min.

11. My public health portal data registry
Unique personal data back from 1970

12. National telemedicine implemented since 2013
CHF patients cost savings: 35%

19. ”…only 6% of people with diabetes
are actually in good control; that’s the
real battle we have to fight”
Camilla Sylvest, Executive vice president, Commercial Strategy & Corporate Affairs, Novo Nordisk
diatribe Foundation’s third annual gathering during ADA 2018

25. M
MUNICIPALITY
G
GOVERNMENT
H
HOSPITAL

26. ”…only 6% of people with diabetes
are actually in good control; that’s the
real battle we have to fight”
Camilla Sylvest, Executive vice president, Commercial Strategy & Corporate Affairs, Novo Nordisk
diatribe Foundation’s third annual gathering during ADA 2018

27. Innovating public Health Systems
N
No
o t
th
ha
an
nk
ks
s!
!
W
We
e d
do
o n
no
ot
t
h
ha
av
ve
e t
ti
im
me
e

29. Interoperability – not easy

30. C55H10406
48
Hba1c
2007

31. 54
Hba1c

32. MAMIL
Phase
Instagram
running

34. Researchers:
Your way of
eating can
remove diabetes
2 !
So I started
eating fish!

35. My Magic Pill: Ketogenic diet + exercise!

36. C55H10406
31
Hba1c
2017

39. Long term glucose out of bounce again!
54
Hba1c

40. Exercise in Hours

41. Exercise Hours Q4 /2018

42. What happened ?

43. Long term glucose out of bounce again!
78
Hba1c

45. PATIENT
CENTRIC ?
Highly specialised !
Also highly specialised !

47. “Personal data
collection is being
'weaponized against us
with military efficiency”
“the business of
selling ads against
personal data has
become a "data
industrial complex”

48. “Personal data
collection is being
'weaponized against us
with military efficiency”
“the business of
selling ads against
personal data has
become a "data
industrial complex”

50. We have
lost
control

51. We have lost
overview
of our digital
lives

52. GDPR

54. Annemette Broch
Founder & Chairman of the bord of DATA for GOOD Foundation

55. DATA for GOOD
• Foundation structure
• Technology
• Citizen control
• Transparency
• Overview
• Cooperation

56. C
Cr
re
ea
at
ti
in
ng
g T
TR
RU
US
ST
T ?
?

57. C
Cr
re
ea
at
ti
in
ng
g T
TR
RU
US
ST
T ?
?

58. Citizen control
• Easy
• Secure
• Simple

59. Trust in data
Citizen
Companies
Organisations
Research
Research
Organisations
Private
companies

60. Value
creation
with a human
centric approach

61. We can do
something
with GDPR
We can do
even more with
the DfG
Platform

62. We would like
to share
but we want to
decide

63. It’s everyones interest
But no ones responsibility ?

64. DfG Platform
- a platform that secures
• Citizen control
• infrastructure
• collaboration

65. Multiparty
computation
(MPC)
Secures
• Citizen Control
• Secured use of
data
• - Gives us data
insights
anonymized
Server 2
Server 1 Server 3

66. Privacy preserving blockchain

68. Type 1 slide
• What visualisation+

70. Health Data Exchange – HedaX project
1. Connect and Collect 2. Analyze 3. Use
© Copyright Data for Good Foundation 2019
2. Analyze 3. Use
External
storage
External
storage
External
storage
External
storage
GDPR
Consent
Hub
DfG
Citizens
Healthcare
Sector
Public
& Private
Clinical
Research
Analyst
OUTPUT
EMPOWERMENT
INTEGRATED
CLINICAL
PATHWAYS
PERSONALIZED
MEDICINE
PUBLICLY
AVAILABLE
DATA
PRIVATE DATA
CPR REGISTRY
DATA
GENOME DATA
1. Connect and Collect
Secure Multiparty
Computation
Data
Privacy preserving
blockchain

72. DATA for GOOD
77
Innovation & RD Portfolio
Støttet af Innovationsfonden
Budget på 24 mio. kroner
Partners:
Alexandra Institute
National Bureau of Statistics
DataFair
DATA for GOOD
DPO Management
Health360
H. Lundbeck
Danish Cancer Assocation
Monsenso
Secata
Capital Region
Danish Health Portal
National board of Health Data
Funded by Danish Industries Fund
Budget: 7 mio. DKK
Partners:
Alexandra Institute
Data Ethics
DataFair
DATA for GOOD
Insurance & Pension funds
Assocation
OpenTeleHealth
SECATA
Vital Beats
Welfare Tech
OSCAR
Støttet af Innovationsfonden
Budget på 70 mio. kroner
Partners:
A-Evidence
Amgros
National Bureau of Statistics
Danish Regions
DataFair
DATA for GOOD
DPO Management Enversion
Medicine Council
National Genome Center
National hospital Copenhagen
(Rigshospitalet)
Roche A/S
Secata
National board of Health Data
Trial Nation
Tværspor
Se næste side

74. Thanks for your time!