THEWS - Trusted eHealth and eWelfare Space

Motive Seminar Espoo, 3.2.2010 THEWS-Trusted eHealth and eWelfare Space Pekka Ruotsalainen, Research professor (THL) Pirkko Nykänen, Professor (University of Tampere Bernd Blobel, Professor (University of Magdeburg) 3/2/2010 1

The consortium National Institute for Health and Welfare (THL) •P. Ruotsalainen • Hannu Sorvari (Turku University- Faculty of Law) Tampere University- Department of Computer Science •Prof. Pirkko Nykänen, Antto Seppälä University of Regensburg, eHealth Competence Centre •Prof Bernd Blobel 3/2/2010 2

The pervasive health using ubiquitous computing Surveillance Sensors systems Networks Large number of users, contexts and purposes available 24h/7d from any place PHR The holomer 3/2/2010 3

The pervasive health - The lifelong view on health and wellness. - A person acts as his or her own wellness coordinator - Uses knowledge of individual's normal functions - Lifestyles and genetic information are widely used New services: - Health surveillance and monitoring, - Early detection of diseases • Connected personal health models using Web • Pro-active prevention and prediction • Lifestyle control 3/2/2010 4

A person Example: Continuous monitoring Profiles orders Information Monitoring flow Health centre hospital Health professional EHR - Decision making Knowledge base Source: Bo Yo 3/2/2010 5

The information content of the PHR/LPWR From birth to grave all kind of information: • The content of legal EHR, • Data about personal health behaviours • Genealogical and genomic data • Social and psychological functionality • Lifestyle, smell, • Vital signs from BAN, sleeping data, • Communication data, • Context data, • Signals received by implanted nano-sensors, • Emotions etc. is analysed in pHealth and used for different purposes, by different users and in many contexts 3/2/2010 6

The transition from legal EHR to PHR and LPWR LPWR PHR Legal EHR Lifelong EHR Copy EHR of EHRs EHR Present research target The Lifelong Personal Wellness Record (LPWR) is a combination of the personal health record (PHR) and pervasive wellness information 3/2/2010 7

Security and privacy risks in pervasive health • Every event creates traces (digital footprints) • Context information is widely collected and used • Data objects can be automatically linked • Data can be collected in such a way that the data subject can not recognise it • A person can’t control the life-cycle of his information • Big number of heterogeneous users and purposes 3/2/2010 8

Research topics -Security and privacy principles/rules -The PHR/LPWR - Information models of the PHR/LPWR , ontologies and conceptualization pHealth services -Infrastructural services guarding security and privacy in pervasive health -Regulatory framework 3/2/2010 9

The content of this presentation Principles and rules enabling trusted use of personal wellness information in pervasive health 3/2/2010 10

Starting points: Four worldwide accepted principles relevant also in pHealth 1. Principle of existence of privacy 2. Principle of withholdings. The data subject has right and should have equipped with ability to withhold some or all oh his personal data to other persons and organizations at this personal private choice 3. Principle of trusted usage. Responsibilities to data controller (collector) 4. Principle of controlled dissemination. The data subject has right to disclose some or all of his/her personal data and issue constraints on the dissemination (i.e. change the data, extend and restrict it, to withdraw this information and change the constraints). 3/2/2010 11

New principles are needed, because • Principles used today seems to be insufficient. • Present EHR data models are not developed for pHealth environment • Present eHealth architectures cannot guarantee data subject’s secrecy and integrity in pervasive environment 3/2/2010 12

Challenges: -Every human being has its own privacy and security preferences that alternate with situation where personal data are required. - Ubiquitous environment is dynamic and context aware - The is an expanding for secondary use of the information of the PHR/LPWR. 3/2/2010 13

New model: Personal Health Data under Personal Control New rights for the patient or data subject A new interoperable data model with rich meta-data for the PHR/LPWR A dynamic context-aware and policy enabled information infrastructure 3/2/2010 14

Personal Health - new rules The data subject/patient should have the right to define dynamically personal policies (i.e. privileges and obligations) ruling who, where, in what context and for what purposes his/her health data can be used. The patient should be aware of the context and security policies of users and organisations using his/her data. The patient should have tools to trigger de-identification 3/2/2010 on-the-fly based on his/her preferences. 15

Thank you for listening Questions and comments 3/2/2010 are welcome. pekka.ruotsalainen@THL.fi 16

THEWS - Trusted eHealth and eWelfare Space

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