Survivorship Passport für Kinder nach Krebstherapie

SUPA! Survivorship Passport für Kinder nach
Krebstherapie
[email protected]
Professor of Pediatrics
Head of the Clinical Trials Unit S2IRP-CCRI
St. Anna Kinderkrebsforschung e.V.
CHILDREN'S CANCER RESEARCH INSTITUTE
[email protected]
Predictive Healthcare Information Systems
Digital Health Information Systems
Center for Health and Bioresources
AIT Austrian Institute of Technology GmbH
Jahrestagung 2017
15. 3. 2017
Mayer am Pfarrplatz, Wien
Inhalt
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Hintergrund
 Pädiatrische Onkologie - Seltene Erkrankungen
Der Survivorship Passport (SUPA)
Konzept für die Umsetzung in Österreich
Zusammenfassung & Schlussfolgerung
Rare Disease Childhood Cancer
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Rare Disease Definition: Prävalenz < 1 in 2000 www.eurordis.org
Childhood ( < 15 years) Cancer Incidence in Europe: 1 in 6250
Kaatsch et al. Cancer Treat Rev. 2010, 36(4):277-85. Epidemiology of childhood cancer.
In Austria: ~ 185 cases per year (Statistik Austria)
Soft Tissue Sarcoma
7%
Other (VRT)
8%
Neuroblastoma
8%
Wilms Tumour
6%
Bone Tumours
5%
Retinoblastoma
3%
Liver Tumours
1%
Leukaemia
30%
Brain
Tumours
19%
Lymphoma
13%
Deutsches Kinderkrebsregister
Mainz / 2000 Neuerkrankungen
pro Jahr
ENCCA
European Network for Cancer research in Children and Adolescents
 FP7 Network of Excellence
 2011-2015
 Koordinator: St. Anna
Kinderkrebsforschung
(Prof. Ruth Ladenstein)
 AIT: ICT WP Lead:
„Establishing the Virtual
Institute“
 www.encca.eu
The research leading to these results has received
funding from the European Union’s Seventh
Framework Programme (FP7 2007-2013) under
the project ENCCA grant agreement no. 261743.
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Already available Tools from ENCCA
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Survivorship Passport
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EUPID – European Patient IDentity
Management Service
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https://eupid.eu
R. Ladenstein, M. Schrappe, K. Pritchard-Jones, Z. Dobai, S. Essiaf, P. Kearns, et al., "ENCCA - EUROPEAN ACTIVITIES AND
ACHIEVEMENTS WITH POTENTIAL INTEREST OUTSIDE OF EUROPE," Pediatric Blood & Cancer, vol. 62, pp. S202-S202, Nov 2015.
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• given to the patient after therapy
• containing cancer history and
therapy information
• advice and guidance on patientspecific long-term follow-up
• Available in all EU languages
• Developed in cooperation with
PanCareSurFup
• Paper and electronic based
European Network for Cancer research in Children and Adolescents
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European Network for Cancer research in Children and Adolescents
Survivorship Passport - a Lifelong
Cancer-Related Patient-Centered Repository
Lifelong data preservation
The long-term Cancer History
Cancer
and 1st
end of
treatment
FollowFollowups
ups
Follow-up
Cancer
relapse and
2° end of
treatment
FollowFollowups
ups
Follow-up
Secondary
Cancer or
other
diseases
….
Survivorship Passport
Platform
Survivorship Passport
1st version
Survivorship Passport
2nd version
Survivorship Passport
3rd version
How to make the Survivorship Passport „fly“?
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Aim – better healthcare for children with cancer
 Continuity of Care
 Better management of long-term effects
 Enhance „Late Effects“ research
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In Austria by leveraging the existing eHealth infrastructure
 ELGA (Elektronische Gesundheitsakte)
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Aktueller Stand
Ergebnis der Arbeitsgruppe Mitglieder der Konzeptarbeitsgruppe
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„Konzept zur Umsetzung des
Survivorship Passport (SUPA)
unter Einbezug von ELGA in
Österreich“
wurde Ende 2016 dem BMGF
übergeben
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19.03.2017
Ladenstein, Prof. Dr. Ruth, MD, MBA, cPM (St. Anna Kinderkrebsforschung)
Arrouas, MR Dr. Magdalena (BMGF, Abteilung III/2)
Geissler, Univ.-Prof. Dr. Dietmar (Humanomed Zentrum Althofen)
Hackl, Dr. Monika (Statistik Austria)
Kienesberger, Anita (Österr. Kinder-Krebs-Hilfe)
Lax, Univ.-Prof. Dr. Sigurd (LKH Graz West, Pathologie)
Lukas, Univ.-Prof. Dr. Peter (Univ.-Klinik f. Strahlentherapie-Radioonkologie
der Med. Univ. Innsbruck
Plank Veronika (BMGF, Abteilung III/2)
Pregartbauer, DI Manfred (BMGF, Abt.I/B/9 Informationsmanagement)
Prenner, Mag. Engelbert
(BMGF, Abt. I/B/10
Gesundheitstelematik)
Sabutsch, Mag. Dr. Stefan (ELGA GmbH.)
Sadjadi, Natascha, MSc (Österr. Kinder-Krebs-Hilfe)
Sauermann, FH-Prof. DI Dr. Stefan (FH Technikum Wien)
Scharinger, Ing. Robert, BSc, MSc (BMGF, Abt.I/B/9
Informationsmanagement)
Schneider, Mag. Carina (Österr. Kinder-Krebs-Hilfe)
Schreier, Univ.-Doz. DI Dr. Günter (AIT Austrian Institute of Technology
GmbH)
Weninger, Dr. Christian (BMGF, Abt.I/B/9 InformationsmanagementUse
Cases)
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ELGA Law
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Elektronische Gesundheitsakte Gesetz – ELGA-Gesetz
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Grundsätze der Datenverwendung
§ 14. (1) Die durch ELGA verfügbar gemachten ELGA-Gesundheitsdaten
dürfen personenbezogen ausschließlich
 1. zu Gesundheitszwecken gemäß § 9 Z 12 DSG 2000 [...] oder
 2. zur Wahrnehmung der Teilnehmer/innen/rechte gemäß § 16 [...]
verwendet werden.
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 a (direct) link to research is not forseen.
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How can we leverage ELGA concepts, mechanisms and infrastructures for
establishing the SUPA?
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EU General Data Protection Regulation

Regulation (EU) 2016/679

Article 4, Definitions
 ‘pseudonymisation’ means the processing of personal data in such a
manner that the personal data can no longer be attributed to a specific
data subject without the use of additional information, provided that such
additional information is kept separately and is subject to technical
and organisational measures to ensure that the personal data are not
attributed to an identified or identifiable natural person;
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 EUPID Core Requirements
1. Prevent duplicate registration of patients
2. Use different pseudonyms for different contexts
3. Provide a method to link pseudonyms from different contexts under well
defined conditions
4. Preserve the possibility for re-identification by a trusted third party
Vorname,
Nachname,
Geburtsdatum
EUPID Concept
IDAT
[…]
Context1
1 Context entspricht
1 Einverständniserklärung
(z.B. Studie A)
+
Context 2
+
Encryption Hashing
De-Identification
PID1
Gleicher Patient
Neuer Context
 Neues
Pseudonym PSN2
De-Identification
IDATCRYPT
[…]
IDATHAS H
[…]
PID2
• Keine Doppel-Registrierung
• Re-Identifizierung
IDAT
IDATCRYPT
IDATHAS H
MDAT
PID
PSN
EUPID
Identity Data
Encrypted Identity Data
Hashed Identity Data
Medical Data
de-identified context-specific Patient Identifier
Pseudonym
European Unified Patient Identifier
Pseudonymisation
Input (GUI)
accessible (Output)
inaccessible (internal)
Pseudonym für
diesen Context
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Pseudonymisation
Assignment
Assignment
PSN1
PSN2
Assignment
Assignment
EUPID
EUPID selbst ist
für niemanden
sichtbar
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EUPID Schema
EUPID Pseudonymisation Service
SQL Database
Verification
EUPID App Service
(REST)
M. Nitzlnader and G. Schreier, "Patient identity
management for secondary use of biomedical research
data in a distributed computing environment," Stud
Health Technol Inform, vol. 198, pp. 211-8, 2014.
Authorised Service Consumption
Identity Provider Service
EUPID Pseudonymisation Service Clients
Authentication
Android
Phone
Web Application
(Zero Footprint Client)
iPhone
Mobile App
(Mobile Client)
Third Party
Application
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Survivorship Passport in Austria
Electronic Health Record
Domain
Austrian EHR
PO-CCD (CDA)
Patient Domain
Health Care Domain
Health Care
Provider
EHR Portal
a) CDA + IDAT
e1) CDA + IDAT
Survivorship
Passport
Health
Professional
Survivor
d) SP + IDAT
e2) SP + IDAT
Survivorship
Passport
App
Research Domain
b)
IDAT
(encrypted &
hashed)
PSNSP
EUPID Service
EHR … Electronic Health Record
PO-CCD … Pediatric Oncology Continuity of Care Document
CDA … Clinical Document Architecture
IDAT … Identification Data
SP … Survivorship Passport
PSNSP … Pseudonym in Context SP
c)
extracted data +
PSNSP
SP + PSNSP
Survivorship Passport
Service Platform
Health Care Professional
Survivor
Survivorship Passport App
SUPA App Funktionen
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Erstmaliges Genererieren des SUPA (Health Professional)
 Laden des Onkologie-Abschlussberichtes (OAB) / Paediatric Oncology
Continuity of Care Document (PO-CCD)
 Pseudonymisierung unter Verwendung des EUPID Services
 Kommunikation mit der SUPA Service Plattform
• pseudonymisierten Registrierung
• Übertragen der (extrahierten) Daten
• Rückübertragen des generierten SUPA
 Re-Personalisierung des SUPA
Update des SUPA (Survivor)
 Generierung einer aktualisierten Version
• Sprache
• Vorsorgeempfehlungen
 aus einem vorher generierten SUPA oder dem PO-CCD als Token.
Schlussfolgerung
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Für Seltene Erkrankungen wie Krebs bei Kindern ist eine enge
Zusammenarbeit von Forschung und Versorgung besonders wichtig
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Der gewählte Ansatz verbindet drei existierende Elemente
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als Ausgangspunkt für
 Continuity of Care
 Patient Empowerment
 Secondary User of EHR data
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Close the virtuous circle
19.03.2017
Insights
Action
• Guidelines
• Treatment
Information
Data
• Research
Question
• Late Effects
Registry
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More on eHealth …
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www.eHealth2017.at , www.eHealthsummit.at
23. - 24. May 2017
Vienna, Conference Center Schloss Schönbrunn
Special Topic: “Digital Insight – information-driven Health & Care”
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