ehealth2020 digitale burger (& instelling) kluis
TRANSCRIPT
![Page 1: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/1.jpg)
Slide 1
Digitale Burger Kluis
Eindhoven 24 januari 2017
![Page 2: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/2.jpg)
Slide 2
Peter Walgemoed & CarellianceVision: Trust in Medical Communications Electronic (Data) (a)lliance. Founded in 2000.
![Page 3: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/3.jpg)
Slide 3
Genomic Data Curation by Design
![Page 4: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/4.jpg)
Slide 4
Healthcare Data Eco-system stakeholders
Patient Care professionals
Research, Eduction & Knowlegde communities
Board of ManagementAdministrators
Payers =Insurers & Grant Org.
Shared Personal Case Decision Making to
Improve QualityOf Care & Life
Discover & Learnfrom many cases
Pay forValueBased(Case)
Healthcare
ManageHealthcare
ValueProcess
Data
Data
Data
![Page 5: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/5.jpg)
Slide 5
Visie eHealth 2020. Informatievoorziening Zorg en Ondersteuning (IZO)
![Page 6: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/6.jpg)
Slide 6
Visie eHealth 2020. Digitale Burger en Zorginstelling Kluizen.
DBK
![Page 7: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/7.jpg)
Slide 7
5 perspectives on 'my' health data set
1Care
2Research
3Education
4Valorisation
5Citizen
Curator
Citizen
![Page 8: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/8.jpg)
Slide 8
Genetic Test Data Curation by Design
Curator
Managed by Data Rentmeester
Citizen Consent
Privacy Data
DNAData Assets
![Page 9: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/9.jpg)
Slide 9
Peter Walgemoed & CarellianceVision: Trust in Medical Communications Electronic (Data) (a)lliance. Founded in 2000.
“Mijn” Opslag = Fundament van Pyramide
![Page 10: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/10.jpg)
Slide 10
Wat zit er in mijn kluis?
![Page 11: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/11.jpg)
Slide 11
LTO
5 6 7
![Page 12: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/12.jpg)
Slide 12
LTFS (Lineair Tape File System)
Standaard Filesysteem
![Page 13: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/13.jpg)
Slide 13
Voorbeeld MyLTO directory
![Page 14: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/14.jpg)
Slide 14
Tar archief file = Container (Folder)
Met
Standaard Files +
Metadata
Beschrijving, integriteit van en governance van Files
![Page 15: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/15.jpg)
Slide 15
Voorbeeld MyLTO Integrity Metadata
![Page 16: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/16.jpg)
Slide 16
W3C Data interoperability = FAIR
![Page 17: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/17.jpg)
Slide 17
MyLTO Service Process
ResearcherSupported byGovernor and Institute
DataRentmeesterSupported byCarelliance
MyLTOServices
DataDisk
Track& Trace
MyLTOCartridge
1+2
Vault1
Institute
Keys
TrustedKey/VaultAdmin
Disk >myLTO
IntegrityCheck & Arc
MyLTO Governance
Migrationfree
Disk > Tape Admin
myLTOVault
Vault2
Citizen
![Page 18: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/18.jpg)
Slide 18
MyLTO Track & Trace
![Page 19: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/19.jpg)
Slide 19
MyLTO dternity
![Page 20: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/20.jpg)
Slide 20
MyLTO CarelliancePeter Walgmoed
Management & Beheer BV
Governor Vault 1Ambt Delden
TTmyLTO Audit
Vault 2Fortados
TTmyLTO Audit
Carelliance Concepts BV
CLNU82L1 GJ2977L5 *
![Page 21: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/21.jpg)
Slide 21
The challenge( )
![Page 22: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/22.jpg)
Slide 22
Trust by design with audit trail
Curator
Managed by Data Rentmeester
TrustedCloud
Application
TrustedApplication
Data Asset Master
Citizen
Data with integrity hash#
Trusted CloudUser
EncryptedCloud Data Asset Copy3
Curator
Citizen Consent
DNA
DNAM1
DNAM2
SecureArchive
![Page 23: eHealth2020 Digitale Burger (& Instelling) Kluis](https://reader034.vdocuments.site/reader034/viewer/2022051404/58ed83191a28ab19298b4625/html5/thumbnails/23.jpg)
Slide 23
Burger als rentmeester van zijn data kluis?
● Ik kan de data rentmeester rol voor mijn data invullen, maar kan iedere burger dit zelf?
● Verstand van genetische data set? Binnen ErasmusMC is kennis en data beheer op deze set al een probleem. Ik vertrouw op mijn data rentmeester partner bij ErasmusMC.
● Kans om alle data van mij zelf te verzamelen, duurzaam te bewaren en beschikbaar te stellen
● Communities die zich als data coöperatie gaan organiseren:● Patiënten (en hun netwerk) met zeldzame ziektes● Burgers van een (deel van een) stad● Burgers die integraal hun kwaliteit van leven willen verbeteren
(Kenniscentrum QLB)