eHealth in support of high quality care
for rare disease patients in Europe
Frank Robben
General Manager eHealth platform
Sint-Pieterssteenweg 375
B-1040 Brussels
E-mail: Frank.Robben@ehealth.fgov.be
eHealth platform website: https://www.ehealth.fgov.be
Personal website: www.law.kuleuven.be/icri/frobben
Formulation of the challenge
 due to some characteristics of rare diseases
• limited number of patients within a single country
• scarcity of expertise within a single country
 cooperation and knowledge sharing between centres of
expertise and dissemination of expertise towards health
care providers is necessary for appropriate and timely
diagnosis and high quality care for rare disease patients
 this implies the need for
• specific disease information networks
• registries and databases
- for epidemiological and research purposes
- if useful, in support of multidisciplinary, transmural (and even transborder)
health care provision to concrete patients
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Some ICT-related critical success factors
 technical interoperability
 semantic interoperability (only 250 of about 5.000 to
8.000 rare diseases have a code in ICD10 !)
 common business processes
 good balance between
• efficient and effective information exchange and management
• information security, privacy protection and respect for
professional secrecy
 common patient identifiers in case of multidisciplinary,
transmural or longitudinal treatment
 trust of health care providers and patients in the
preservation of the necessary autonomy and the security
of the system
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Inspiration from Belgian eHealth platform ?
 overall objective
• how?
- through a well-organised, mutual electronic service and information
exchange between all healthcare actors
- with the necessary guarantees in the area of information security, privacy
protection and professional secrecy
• what?
-
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optimization of healthcare quality and continuity
optimization of patient safety
simplification of administrative formalities for all healthcare actors
reliable support of healthcare policy and research
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Inspiration from Belgian eHealth platform ?
 vision and strategy
• no central storage of personal healthcare data, except, in a
coded way, in registries and databases for epidemiological and
research purposes
• safe electronic data exchange between all actors in healthcare
• if the patient wishes so, gradual referencing to places where his/
her personal health data are available, without being able to
deduce from those references any intrinsic information about
health
• unrestricted application of law concerning privacy protection,
professional secrecy, patient rights and the exercise of medicine
• the platform is managed by the representatives of the various
healthcare actors in order to create trust
• respect for the therapeutic liberty of healthcare providers
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Inspiration from Belgian eHealth platform ?
 vision and strategy
• special attention to information security and privacy protection
- end-to-end encryption of exchanged personal health data
- very thorough preventive access control
- personal health data can only be exchanged through the eHealth platform
with permission provided legally, by an independent Sectoral Committee of
the Privacy Commission or by an informed consent of the patient
- logging of electronic services performed (who, what, about whom, when –
not exchanged personal health data !)
- information security policies and advisors
• safe operation of the eHealth platform is controlled by an
independent Sectoral Committee of the Privacy Commission
• the eHealth platform does not perform studies itself and provides
no intrinsic policy support in the area of healthcare, so as to
avoid possible conflicts of interest
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Architecture Belgian eHealth platform
Patients, healthcare providers
and institutions
Health Portal
VAS
VAS
VAS
VAS
RIZIV-INAMI
site
VAS
VAS
VAS
VAS
Care provider
software
Healthcare
institution
software
eHealth
platform
Portal
VAS
VAS
VAS
VAS
VAS
VAS
VAS
VAS
MyCareNet
VAS
VAS
VAS
VAS
Users
Basic services
eHealth platform
Network
ADS
ADS
ADS
ADS
Suppliers
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ADS
ADS
Architecture Belgian eHealth platform
 value-added service (VAS)
• a service made available to patients and / or its healthcare
providers
• the provider of a value-added service can for this purpose use
the basic services offered by the eHealth platform
 basic service
• a service developed and made available by the eHealth platform,
which can be used by the provider of a value-added service in
developing and offering that value-added service
 authentic data source (ADS)
• a database containing reliable information that can be accessed
via the eHealth-platform
• the database manager is responsible for the availability and
(organisation of) the quality of the information made available
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Task division Belgian eHealth platform
 9 multifunctional basic services are provided free of
charge by the eHealth platform
 the development and maintenance of the value-added
services and of the authentic data sources is the primary
responsibility of other actors
 the eHealth platform acts as the developer or hosting
platform for certain value-added services or authentic
data sources not containing personal health data
concerning patients
 the choice was made to work as much as possible based
on open standards or, at least, open specifications in
order to prevent dependence on one or a limited number
of suppliers
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Basic services Belgian eHealth platform

fully operational
1.
2.
3.
4.
5.
coordination of electronic processes
web portal (https://www.ehealth.fgov.be)
integrated user and access management
logging management
system for end-to-end encryption
-
for communication of data to a recipient known at the time of the encryption
for communication of data to a recipient not known at the time of the
encryption
6. personal electronic mailbox for each healthcare supplier with
basic features
7. electronic time stamping
8. coding and anonymizing
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Basic services Belgian eHealth platform
 operational by the end of 2010
9. reference directory (“metahub”)
 operational by the second quarter of 2011
6. personal electronic mailbox for each healthcare supplier with
extended features
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Coordination of electronic processes
Clients
Application
Application
Application
Exposed services
eHealth Service
Bus (ESB)
Orchestration
Orchestration
Application Integration & Monitoring
Consulted services
Providers
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Application
Application
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Application
User and access management
Action on application
DECLINED
Policy
Application
(PEP)
User
Action on application
ALLOWED
Application
Action on application
Decision
request
Fetch
Policies
Decision
answer
Policy
Decision (PDP)
Information
Question/
Answer
Information
Question/
Answer
Authorisation
management
Policy
Administration
(PAP)
Policy Information
(PIP)
Policy Information
(PIP)
Policy Repository
Authentic Source
Authentic Source
Administrator
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Encryption
eHealth platform
Internet
Healthcare actor
Person or entity
1
3
Connector or
other software to
generate key pair
Web service
Register key
Identification
certificate
Sends
public key
Identification
certificate
2
Authenticates sender
4
Stores
public key
2
Stores private key
in a secure way
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Public keys
repository
14
1
Asks for public key
Web service
Ask public key
Internet
Identification
certificate
Message originator
Identification
certificate
Encryption
eHealth platform
2
Authenticates sender
3
4
Sends
public key
Encrypts
message
Identification
certificate
Message recipient
5
Decrypts message
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Stored
private
key
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Public keys
repository
Encryption
Key
Management
/ Depot
5 receives key
2 sends key
1 asks for key
4 justifies right to
obtain key
User 1
Originator
4 justifies right to
obtain message
3 sends encrypted message
5 receives message
Messages
Depot
Message encrypted with
symmetric key
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User 2
Recipient
Coding and anonymizing
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Coding and anonymizing
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Conclusion
 the necessary electronic information exchange of
personal health between health care providers in several
European countries with regard to rare diseases could be
facilitated by a (virtual) paneuropean ICT platform, acting
as a trusted third party and offering basic services for
•
•
•
•
business process orchestration
end-to-end encryption of exchanged personal health information
user and access management
coding and anonymization of health information for
epidemiological or research purposes
 governance of the platform could be done representatives of national eHealth platforms or Ministries for Public
Health
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Conclusion
 registries or databases containing personal health
information should be managed outside the platform by
representatives of health care providers and patients
 agreements have to be made concerning
• technical interoperability
• semantic interoperability
• common patient identifier if needed
 if useful, scripts containing specific expertise with regard
to rare diseases could be developed and applied to
standardized electronic (summary) patient records
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Read more
 Belgian eHealth platform portal
(https://www.ehealth.fgov.be) contains detailed functional
and technical documentation on
• the basic architecture
• the 9 multifunctional basic services provided by the eHealth
platform
• the value-added services that use these basic services
• those authentic sources already available
• the norms, standards and specifications
• all electronic messages
 own website (http://www.law.kuleuven.be/icri/frobben)
contains all slides used in presentations
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Th@nk you !
Questions?