This presentation at the ELIXIR SME Innovation meeting on Personal Health Train and the distributed analysis of health data covered the value of data in health data networks. Slides attached for reference purposes. #ELIXIR #SME #PHT #personalhealthtrain #healthdata

1. The value of FAIR Data in
Health Data Networks
October 11, 2019 – ELIXIR Innovation and SME Forum, Utrecht
Kees van Bochove – Founder, The Hyve
@keesvanbochove

2. 2
FAIR in Health Data Networks
● What?
● Why?
● How?

3. WHAT?
3

4. 4
Researcher
Healthcare
Professional
Patient /
Citizen
Health
Data
https://youtu.be/C95pl11zdAs - webinar Health Data Networks

5. 5
Network architectures

6. 6
Genomics
England
Research Environment
NHS Trusts
Airlock
Research Community

7. 7
MedMij Personal Health Apps

8. WHY?
8

9. 9
Researcher
Healthcare
Professional
Patient /
Citizen
Health
Data

10. HOW?
10

11. Core values
● Share
● Reuse
● Specialize
Professional Services
● Software Engineering
● Infrastructure Support
● FAIR Data Services
Fast-growing
● Started in 2012
● Now 40+ people
We advance biology and medical sciences
by building and serving thriving open source communities
11
Customers
● Pharma & Life Sciences
● Healthcare
● Government & non-profit

12. 12
Teams at The Hyve
Research Data Management
● FAIR Data Governance consultancy
● Fairspace (meta)data management
Genomics
● Cancer data portal: cBioPortal
● Knowledge base: Open Targets
Health Data Networks
● Data warehouses: tranSMART, i2b2
● Cohort selection: Glowing Bear
● Request Portals: Podium
Real World Data
● Real world evidence: OMOP/OHDSI
● Wearables platform: RADAR-BASE

13. 13
The Year 2017 at
58 Projects
13pharma companies
10hospitals
11consortia/biobanks/health
networks/patient organisations
33 Projects with
patient level data
7Clinical Data
Models

14. 14
From : Architecture of a Biomedical Informatics Research Data Management Pipeline, Bauer, .. Sax et al. Stud Health Technol Inform. 2016;228:262-6.
FHIR
IHE
CDA
HL7
I2b2
OMOP
SMART
CWL/WDL
RADAR
OCI
GA4GH
openEHRDICOM
SNOMED
ICD
LOINC
CDISC
DCAT
Two
perspectives:
Healthcare:
HL7 FHIR, RIM,
SMART on FHIR,
DCM’s, ICD,
OpenEHR etc.
Research &
Trials: HPO,
OMOP, i2b2 /
tranSMART,
SNOMED-CT,
LOINC, ….

15. 15
Interoperability on all levels is required
eHealth European Interoperability Framework
https://ec.europa.eu/health/sites/health/files/ehealth/docs/ev_20151123_co03_en.pdf

16. 16
Work through existing communities
OHDSI Symposium
GA4GH Annual MeetingI2b2 (tranSMART) Meeting
etc…

17. 17
FAIR Workshop at The Hyve in Utrecht, 2018
http://blog.thehyve.nl/blog/highlights-from-pistoia-alliances-fair-workshop
https://www.sciencedirect.com/science/article/pii/S1359644618303039

18. 18
Bringing people & communities together
http://blog.thehyve.nl/blog/pan-european-health-data-networks-meeting

19. 19
What is the value of health data?

20. 20
How do treatment pathways for
T2DM differ between countries?
http://bit.ly/2jYCGkI

21. 21
Webinar materials
https://youtu.be/jcxZiqkqMgc
Personal Health Train
architecture comments
https://youtu.be/mktAtHmy-FM
http://bit.ly/fairhealth
Personal Health Train (DTL)
https://youtu.be/X5yuoJoL6xs
Health Data Networks
https://youtu.be/C95pl11zdAs
Open Science Study-a-thon