https://youtu.be/C95pl11zdAs Many countries around the world are starting to organise national health data research networks, investing hundreds of millions of dollars, euros, yuan, pounds, etc. in such initiatives. Some of these are organized by the government, such as the NIH All of Us Program in the U.S. and Genomics England, others are started by businesses such as PatientsLikeMe or by patient organizations such as DuchenneConnect. And then there are research-driven infrastructures such as ELIXIR and BBMRI and multi-stakeholder initiatives such as PCORI and HealthRI. During this webinar, we are going to discuss the current technical practice of establishing health data research infrastructures, our experience in building them or advising on that, and the key elements of success that one should not overlook in order to build a healthy, long-lasting health data research network.

1. Health Data Research
Infrastructures Webinar
Irina Pulyakhina
Kees van Bochove - @keesvanbochove

2. 2
Policy drivers

3. 3
Health Data Research Infrastructures

4. CTMM TraIT Data Workflow
Hospital (IT) Translational Research (IT)
data domains
clinical data
imaging data
experimental data
biobanking
integrated data translational
analytics
workbench
HIS
PACS
LIS
Galaxy
tranSMART/
cohort explorer
R
tranSMART/i2b2
datawarehouseCBM-NL
OpenClinica
NBIA + AIM
e.g. PhenotypeDB,
Annai Systems
e.g.
Galaxy, Chipster
Samples (IT)
Pseud
onymi
zation
Public Data
BIMS

5. 5
Researcher
Healthcare
Professional
Patient /
Citizen
Health
Data

6. 6
Let’s build a unified national
platform for health research!

7. 7
Conway’s Law
Any organization that designs a system
(defined broadly) will produce a design
whose structure is a copy of the
organization's communication structure.
- Melvin Conway, in 1968

8. 8
Researcher ‘Apps’
Catalogue
• View Data
Sources
• Browse Data
Request
Portal
• Request Data
Access
• Request
Samples
Research
Environment
• Interactive
Analytics
• Scientific
Notebooks
• Computational
Workflows

9. 9
Data Biosphere: Principles
▶ Modular
▶ Community-Driven
▶ Open
▶ Standards-Based
databiosphere.or
g

10. 10 databiosphere.or
g

11. 11
Future Webinar Topics
▶ Biomedical Research & GDPR law
▶ The FAIR Data Principles
▶ Virtual Research Environment
▶ Computational Workflow Environments

12. Health Research Infrastructure
Researchers
Research
Datasets
Data Access
Requests /
Grants
Apps/
Workflows
Patients
Consents
Data Catalogue Patient Finder
Private
Analysis
Environment
Projects /
Billing
Samples
Clinical Study
Environment
Sample
Requests
Live Clinical
Data
Data Models
Apps
Micro-
services
Impleme
ntation
ideas
Data Catalogue
Sample
Requests
Apps/
Workflows
Research
Datasets
Clinical Study
Environment
Servers
Live Clinical
Data
ResearchersPatientsConsentsSamplesPatient FinderData Models
Data Access
Requests /
Grants
Private
Analysis
Environment