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: [email protected]

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 2 15/11/2010

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 3 15/11/2010

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?

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 4 15/11/2010

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 5 15/11/2010

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 6 15/11/2010

Architecture Belgian eHealth platform

Patients, healthcare providers and institutions

Health Portal

VAS VAS

RIZIV-INAMI site

VAS VAS

eHealth platform Portal MyCareNet

VAS VAS

Healthcare institution software

VAS VAS

Care provider software

VAS VAS Users Network Basic services eHealth platform ADS Suppliers

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ADS ADS

7

ADS 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 8 15/11/2010

   

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 9 15/11/2010



Basic services Belgian eHealth platform

fully operational 1.

2.

3.

4.

5.

6.

7.

8.

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 personal electronic mailbox for each healthcare supplier with basic features electronic time stamping coding and anonymizing 10 15/11/2010

 

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 15/11/2010 11

Coordination of electronic processes

Clients eHealth Service Bus (ESB) Application Orchestration Application Application Exposed services Orchestration Application Integration & Monitoring Consulted services Providers Application Application Application 12 15/11/2010

User and access management

Authorisation management Administrator User Policy Fetch Policies Action on application DECLINED Action on application Decision request Policy Application (PEP) Action on application ALLOWED Decision answer Administration (PAP) Policy Decision (PDP) Information Question/ Answer Policy Information (PIP) Application Information Question/ Answer Policy Information (PIP) Policy Repository 13 Authentic Source Authentic Source 15/11/2010

Healthcare actor Person or entity

1

Connector or other software to generate key pair

2

Sends public key

2

Stores private key in a secure way 15/11/2010

Encryption

Web service Register key eHealth platform

3

Authenticates sender

4

Stores public key Public keys repository 14

Encryption

Message originator

1

Asks for public key Web service Ask public key Internet

4

Encrypts message Message recipient

5

Decrypts message 15/11/2010 Identification certificate Stored private key 15 eHealth platform

2

Authenticates sender

3

Sends public key Public keys repository

2

sends key User 1 Originator

Encryption

1

asks for key Key Management / Depot

5

receives key

4

justifies right to obtain key

4

justifies right to obtain message

3

sends encrypted message

5

receives message Messages Depot Message encrypted with symmetric key 16 User 2 Recipient 15/11/2010

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 representa tives of national eHealth platforms or Ministries for Public Health 19 15/11/2010

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 20 15/11/2010

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 21 15/11/2010

Th

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nk you !

Questions?