Julian Isla gave a presentation on using big data and emerging technologies for rare diseases. He discussed how data from sources like IoT, blockchains, and digital patient records could be analyzed to improve drug development and patient access. By moving complexity from physicians to systems through approaches like patient vector models and data archeology, new insights may be gained that help more patients.

1. Julian Isla
June 11, Barcelona
Big Data
for Rare Diseases

2. 2
Microsoft Consulting Services. AI
Chairman and Founder
CSO
TAG. Therapeutic Advisory Group
member
Patient expert at COMP
Scientific Advisory Board

3. 3

5. Orphan drugs

6. 2008 2018
VPA+CLB+ST
P
VPA+CLB+ST
P
CBD / FEN

7. www.ema.europa.eu/docs/en_GB/document_library/Leaflet/2017/12/WC500240710.pdf

12. How is Dravet Syndrome patients access to drugs in Europe?

13. Country Total Score Corrected Score
Spain 209 87
Italy 201,5 79,5
UK 205 83
Netherlands 221 99
Romania 122 0
Poland 137 15
Portugal 195 73
Croatia 128 6
Austria 215 93
Germany 211 89
Switzerland 214 92
Belgium 201 79
Total Score: Sum of total number of points by country
Corrected Score: Total Score – Minimun Score

15. $
6.000.000.000.000
$
http://www.imf.org/en/Data
GDP

16. High cost develoment
Slow development

17. “When we're making drugs, we have to be
better than nature”
“Drug development takes time and
money because it's difficult and failure is
a strong possibility”

19. Big data IoT BlockChain

20. Continuum

22. 110 years

26. IoT IoP

27. Internet of Patients

28. Patient
information
digitalization

34. Who is producing medical data

39. Word2Vec: A model from NLP

40. Patient2Vec: A Patient is a vector

42. Move the complexity
from physicians to
systems

43. cockpit

44. Airbus 350 cockpit

45. Blockchain

48. Data Archeology

49. Digital identity

53. Welcome to the Eurordis family

54. Thank you for your attention
Foundation 29
Tel: + 34 630986273
Julian.isla@foundation29.org
Julian Isla