salus d2 2 2 - dissemination v1.0 final · salus-fp7-287800• d2.2.2 • version 1.0 • january...

SALUS “Scalable, Standard based Interoperability Framework for

Sustainable Proactive Post Market Safety Studies”

SPECIFIC TARGETED RESEARCH PROJECT PRIORITY Objective ICT-2011.5.3b) Tools and environments enabling the re-use of electronic health records

SALUS D2.2.2 Dissemination Plan

Due Date: January 31, 2014 Actual Submission Date: January 31, 2014 Project Dates: Project Start Date : February 01, 2012

Project End Date : January 31, 2015 Project Duration : 36 months

Deliverable Leader: The EuroRec Institute

Project co-funded by the European Commission within the Seventh Framework Programme (2007-2013)

Dissemination Level

PU Public X PP Restricted to other programme participants (including the Commission Services) RE Restricted to a group specified by the consortium (including the Commission Services) CO Confidential, only for members of the consortium (including the Commission Services)

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SALUS-FP7-287800• D2.2.2 • Version 1.0 • January 31, 2014 of 59

Document History:

Version Date Changes From Review

V0.1 2013.01.14 Initial document, partially incremental to the previous reporting period, with input from the consortia partners

L.Ciglenecki, J. Devlies,

All

V0.3 2013.01.25 Pre-final document, with additional input from the consortia partners

Consortia partners (edited by L.Ciglenecki)

All

V1.0 2013.01.30 Minor changes in Ch 6.5; The final version

Gokce Banu Laleci; L.Ciglenecki

All

Contributors (Benef.) Jos Devlies (EuroRec), Leo Ciglenecki (EuroRec), Gunnar Declerck (INSERM), Yves Parès (INSERM), Dirk Colaert (Agfa), Els Lion (Agfa), Hong Sun (AGFA), Kristof Depraetere (AGFA), Marc Twagirumukiza (AGFA), Gokce Banu Laleci (SRDC), Mustafa Yuksel (SRDC), Ali Anil Sinaci (SRDC), Tomas Bergvall (UMC), Niklas Norén (UMC), Hanna Lindroos (UMC), Tobias Krahn (OFFIS), Bharat Thakrar (Roche), Hans Coon (Roche), René Schippers (ERS), Gerard Freriks (ERS), Andrea Migliavacca (LISPA), Sara Facchinetti (LISPA)

Responsible Author Jos Devlies Email [email protected]

Beneficiary EuroRec Phone +32-475-266148

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SALUS Consortium Contacts:

Beneficiary Name Phone Fax E-Mail SRDC Gokce Banu Laleci

Erturkmen +90-312-2101763 +90(312)2101837 [email protected]

EUROREC Georges De Moor +32-9-2101161 +32-9-3313350 [email protected] UMC Niklas Norén +4618656060 +46 18 65 60 80 [email protected] OFFIS Wilfried Thoben

+49-441-9722131

+49-441-9722111

[email protected]

AGFA Dirk Colaert +32-3-4448408 +32 3 444 8401 [email protected] ERS Gerard Freriks +31 620347088 +31 847371789 [email protected] LISPA Davide Rovera +39 02393311 +39 02 39331207 [email protected] INSERM Marie-Christine Jaulent +33142346983 +33153109201 marie-

[email protected] TUD Peter Schwarz +49 351 458 2715 +49 351 458 7319 Peter.Schwarz@uniklinikum-

dresden.de ROCHE Jamie Robinson +41-61-687 9433 +41 61 68 88412 [email protected]

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EXECUTIVE SUMMARY This deliverable reports on the dissemination activities by members of the SALUS consortium. It is a revision and an upgrade of the first deliverable, reporting dissemination activities of the first two years of the SALUS project, however with a focus on the new input in Year 2. The first year of the project was mainly a year of user requirements definition, SALUS applications design and the initial developments. Dissemination was therefore mainly limited to awareness building and dissemination of SALUS initial options and developments. The consortium built its web site, defined how dissemination activities should be planned and reported and realised yet several papers submitted and/or presented at conferences and/or workshops. We also have an early journal article in IEEE TITB which is covered by SCI. The second year dissemination activities were primarily focused on reinforcing the awareness building among the selected interested parties and presenting the early results of the project. We have also disseminated the project results to patient and healthcare professional organizations through a short infosheet prepared.

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TABLE OF CONTENTS

Executive Summary ................................................................................................................................ 4!Table of contents ..................................................................................................................................... 5!Table of figures ....................................................................................................................................... 6!Overview of tables .................................................................................................................................. 6!1! Purpose ........................................................................................................................................... 7!2! Reference documents ..................................................................................................................... 7!

2.1! Definitions and Acronyms ...................................................................................................... 7!2.2! Reference documents .............................................................................................................. 7!

3! Task description ............................................................................................................................. 8!3.1! Task 2.2 Description in the DOW ........................................................................................... 8!3.2! Partners involved in WP2, Task 2.2 ........................................................................................ 9!

4! Intellectual property ....................................................................................................................... 9!5! Communication and Dissemination plan ..................................................................................... 10!

5.1! Purpose .................................................................................................................................. 10!5.2! Key Messages ....................................................................................................................... 10!5.3! Target Audiences .................................................................................................................. 10!5.4! Role of the Partners ............................................................................................................... 11!5.5! SALUS Dissemination Report Form .................................................................................... 11!5.6! Planned communication and dissemination activities .......................................................... 11!5.7! Publications ........................................................................................................................... 12!5.8! Internal Dissemination .......................................................................................................... 12!5.9! Metrics .................................................................................................................................. 12!

6! Dissemination activities ............................................................................................................... 14!6.1! Logo and SALUS Image ....................................................................................................... 14!6.2! SALUS Web Site .................................................................................................................. 16!6.3! Twitter Account .................................................................................................................... 17!6.4! Google+ Profile ..................................................................................................................... 17!6.5! Publications ........................................................................................................................... 19!

6.5.1! International peer-reviewed .......................................................................................... 19!6.5.2! Other Publications, Articles, Newsletters, Press Releases ............................................ 20!

6.6! Conferences ........................................................................................................................... 27!6.6.1! Papers, Posters and Presentations at Conferences ........................................................ 27!6.6.2! Attendance at Conferences ............................................................................................ 35!

6.7! Presentations to authorities ................................................................................................... 36!6.8! Presentations to other projects and convergence activities ................................................... 37!6.9! Presentations to patient and healthcare organisations ........................................................... 37!6.10! Dissemination Material ......................................................................................................... 37!6.11! Metrics .................................................................................................................................. 37!

ANNEX 1! SALUS Fact Sheet ....................................................................................................... 42!ANNEX 2! SALUS Poster .............................................................................................................. 44!ANNEX 3! SALUS White Paper .................................................................................................... 45!ANNEX 4! Dissemination report template ..................................................................................... 46!ANNEX 5! List of events-congresses ............................................................................................. 48!ANNEX 6! SALUS Infosheet ......................................................................................................... 52!

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TABLE OF FIGURES Figure 1: SALUS Logo: extended ........................................................................................................ 14!Figure 2: SALUS Logo: reduced .......................................................................................................... 15!Figure 3: SALUS Web Site Home Page (http://www.salusproject.eu) ................................................ 16!Figure 4: SALUS Twitter Account ....................................................................................................... 17!Figure 5: SALUS Google+ page ........................................................................................................... 18!Figure 6: An article in the Uppsala Reports, October 2012 .................................................................. 22!Figure 7: An article in the Uppsala Reports, July 2013 ........................................................................ 25!Figure 8: Web page statistics – by Audience (Q4 2012) ...................................................................... 38!Figure 9: Web page statistics – by Location (Q4-2012) ....................................................................... 39!Figure 10: Web statistics – New vs Returning (1 Feb 2013– 7 Jan 2014) ............................................ 39!Figure 11: Web statistics – Language Overview (1 Feb 2013 – 7 Jan 2014) ....................................... 40!Figure 12: Web statistics – Blog Audience Overview (1 Feb 2013 – 7 Jan 2014) ............................... 41!

OVERVIEW OF TABLES Table 1 List of Abbreviations and Acronyms ......................................................................................... 7!Table 2 Project resources allocated to Task 2.2 ...................................................................................... 9!Table 3 Dissemination Metrics ............................................................................................................. 38!

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1 PURPOSE

The purpose of this Deliverable is to document the SALUS Communication and Dissemination Strategy. The “Dissemination Plan” deliverable was first prepared after the first year of the SALUS project (D2.2.1), while the present version of the deliverable (D2.2.2) is a revision and an upgrade of the first deliverable, reporting also on dissemination activities of Year 2. Task 2.2 is part of Work Package 2 that intends to “identify the product(s) or product components that can be derived from the project” and “to position them within the partner’s products offering” as well as in the market. Task 2.2 intends to define a dissemination plan and to coordinate dissemination activities in order to optimize positioning of the project and the project results, considering the Exploitation Plan as defined through Task 2.1.

2 REFERENCE DOCUMENTS

2.1 Definitions and Acronyms Table 1 List of Abbreviations and Acronyms

Abbreviation/ Acronym DEFINITION

ADE Adverse Drug Event CDISC Clinical Data Interchange Standards Consortium CEN Committee Europeen de Normalisation CRO Contract Research Organisation DOW Description of Work

EC European Commission EFPIA European Federation of Pharmaceutical Industries and Associations EHR Electronic Health Record, Electronic Healthcare Record EU European Union

HL7 Health Level Seven International ICD-10 International Classification of Diseases

ICT Information Communication Technology IP Intellectual Property

ISO International Standards Organisation LOINC Logical Observation Identifiers Names and Codes

SALUS Scalable, Standard based Interoperability Framework for Sustainable Proactive Post Market Safety Studies

SNOMED-CT Systematized NOMenclature of MEDicine WHO World Health Organisation

2.2 Reference documents The following documents were used or referenced in this document:

− The Description of Work of the SALUS project − Deliverable D1.1.1 of SALUS project: “SALUS Project Web Site” − Deliverable D2.1.1 of SALUS project: “Exploitation Plan”

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3 TASK DESCRIPTION

3.1 Task 2.2 Description in the DOW The goal of Task 2.2 is to raise awareness about the approach and the results of the project; it will prepare the ground for the exploitation of the SALUS results. It will seek synergies with other initiatives and will establish cooperation links with them. Cooperation activities as such are addressed in Task 2.4 and Deliverable D2.4.1. The dissemination plan will define the consortium strategy and the list of actions for disseminating the project results and will ensure wide dissemination of research and practical outcomes to related standards bodies, research communities and the industry. The dissemination activities can be listed as follows:

i. Organization of workshops and information days, which will usually coincide with related bigger events such as conferences, to disseminate the progress achieved in the project and collect feedback from external stakeholders,

ii. Publishing and presenting results within the scientific and industry community, including the medical conferences and medical journals,

iii. Attendance to the main interchange of information forums, conferences, etc, iv. Representation of the European Commission at the international events when

requested by the EC, v. Conducting successful pilots with players of the Clinical Research Industry, vi. Presentation to local and state authorities, vii. Participation in concertation activities with other ICT funded projects related to the

area of the project and organised by the European Commission. Dissemination and travel resources allocated to the SALUS consortium ensure participation to these activities.

viii. Supporting interested developers by publicising the availability of open source tools and documentation,

ix. Disseminating project information in the European research community through research clusters,

x. Support of international standards development in support of results, specifically in the areas of healthcare terminologies, regulated clinical research studies and EHR/PHR exchange standards and profiles,

xi. Support for European interest and recognition of European standards, xii. Active participation in the closely related committees and meetings specifically CEN

TC251 WGs, ISO TC215 WGs, HL7, IHE, CEN 13606, openEHR, CDISC, SNOMED-CT, ICD-10, LOINC for sharing the experience and results achieved during the project with these bodies,

xiii. Press releases at project start and at major milestones; xiv. The project website will be kept updated with news, public deliverables, articles and

material from participation at events (e.g., slides of presentations, keynote speeches, articles in journals and conference proceedings).

In addition to these, a SALUS White Paper will be developed describing the vision and the strategy of the project in early phases of the project for wide distribution of project vision and results to the stakeholders. The White Paper is periodically revised according to the progress made by the project. As a roadmap to Green Field Member states, we will prepare a guidance note presenting the SALUS standard based interoperability profiles for conducting post market safety studies, the common core data set that will enable sharing clinical care data available in EHR systems for

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post market safety studies, and the open source toolsets provided by SALUS project. These interoperability profiles together with the common core data set will serve as a roadmap for “green field” member states: the systems that will be built from scratch can be developed in accordance to these interoperability interfaces by making use of the open source toolsets provided. The “Dissemination Plan” will be first issued after the first year; revisions will be submitted to the Project Management Board yearly. Finally in accordance with Article II.30 - All SALUS dissemination activities will be reported in the plan for the use and dissemination of foreground, including sufficient details/references to enable the Commission to trace the activity. With regard to scientific publications relating to foreground published before or after the final report, such details/references and an abstract of the publication will be provided to the Commission at the latest two months following publication. Furthermore, an electronic copy of the published version or the final manuscript accepted for publication will also be provided to the Commission at the same time for the purpose set out in Article II.12.2 if this does not infringe any rights of third parties.

3.2 Partners involved in WP2, Task 2.2

Table 2 Project resources allocated to Task 2.2

SDR

C

EU

RO

RE

C

UM

C

OFF

IS

AG

FA

ER

S

LIS

PA

INSE

RM

TU

D

RO

CH

E

TO

TA

L P

M

T2.4 1 7 2 1 1 1 2 2 1 1 19.0

4 INTELLECTUAL PROPERTY This document is public and can be reused by whoever interested to do so. Though the project is committed to offer as much as possible open source free available products and services, some products or services reported / described in this deliverable may be IP protected based on the consortium agreement. A specific “Intellectual Property Rights Agreement” is provided and available on the SALUS web site as deliverables D2.3.1. and D2.3.2.

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5 COMMUNICATION AND DISSEMINATION PLAN This communication and dissemination plan is based on the definition of key messages to be addressed at defined target audiences

5.1 Purpose This communication and dissemination plan intends to set a number of guidelines for the consortium partners and to suggest a number of tools to raise awareness about the project, the options taken by the consortium and the products as well as the services resulting from the project.

5.2 Key Messages Communication and Dissemination requires concise and clear key messages addressed at appropriate target audiences. The content evolves and becomes more and more concrete and “interesting” over time, considering the progressive completion of the project. Create awareness about the project as such and the expected results of the project will therefore be the initial message, surely in the first year of the project. It will promote and deepen the understanding of the project. More domain oriented messages are at the start of the project consist of more objectives, expected conclusions of the project rather than realisations. The consortium identified a preliminary list of key messages, key expectations, to be proved during the lifetime of the project.

• On-site drug monitoring can improve patient safety, based on known and well documented risks for Adverse Events.

• The use of high quality standards based EHR data improves efficiency of ADE monitoring.

• EHR data can be used for detection and early warning of unknown risks for patient safety, provided.

• SALUS will provide tools enabling to increase efficiency of ADE reporting by integrating EHR data into that process.

This list will evolve during the lifetime of the project.

5.3 Target Audiences The consortium identified a number of directly targeted audiences:

• National and International Drug Agencies, Pharmacovigilance Institutes or Organisations and by extension other Public Health Agencies;

• Clinical Research Organisations; • Pharmaceutical Industry; • EHR system providers; • Healthcare Professionals, users of the EHR applications.

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The patients and the Health Authorities are interested and involved parties, mainly as beneficiaries of any improved drug related patient safety.

5.4 Role of the Partners All project partners should contribute to the communication and dissemination activities. It is a common challenge. This contribution can be done in different ways:

• providing on regular basis information on the progress of their work, their involvement in the project,

• contributing to the production of the promotional material, • suggesting conferences and meeting where SALUS may be presented or organise

a workshop, • providing source material for press conferences and/or the web site, • preparing publications.

EuroRec is leading this task in close partnership with the coordinator. Partners are free to suggest dissemination activities and to attend them, on their own budget. They should nevertheless report on these activities (see 5.5). They should also contact the project coordinator and/or the dissemination task responsible in order to optimise awareness for the project.

5.5 SALUS Dissemination Report Form A form to report dissemination activities has been developed. The form is attached as Annex 3.

5.6 Planned communication and dissemination activities The selected and planned dissemination activities are standard. They are and will be focused on the target audiences and on favouring cooperation with other projects in the ‘cluster’ for secondary use of EHR data and on Pharmacovigilance. The DOW listed under the task description Task 2.2 a number of actions and activities as examples of efficient communication and dissemination. See chapter 3.1. The following activities, yet in use, reported in the next chapter, were listed:

• Logo and Templates to increase image of the project, • Web site, • Use of other social media such as Twitter, • Dissemination material: flyer, white paper, SALUS Fact Sheet, • Presenting the project at Conferences as poster or as papers, • Publishing Journal articles in Journals having a high impact factor • Direct contact with National and International Drug Agencies.

An initial list of possibly interesting “meetings” or events was published on the SALUS web site, for internal use. That list will be updated regularly. The most recent version of the list is attached as Annex 4, as per January 2014.

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5.7 Publications The consortium favours and expects to realise some international peer-reviewed publications during the lifetime of the project. These publications might be on the project as such or regarding any related topic, mentioning the project as a reference. All publications about SALUS or referring to activities within the SALUS project or mentioning results of the SALUS project should be submitted to the project consortium prior to their publication. The Project Management Board will have the final word in case of non-agreement between the coordinator and a candidate publisher. All partners are encouraged to submit such publications. They should nevertheless include all partners, individuals involved in task they are reporting about. All publications should mention “The SALUS Project is research project partially funded by the European Commission, contract FP7-ICT-2011-7-287800”.

5.8 Internal Dissemination Some of the project partners have strong relations with either national authorities or international pharmacovigilance centres of expertise. They should provide a particular effort in creating awareness about the SALUS project.

UMC will create awareness of the SALUS project with the national authorities through the newsletter called Uppsala Reports and the annual pharmacovigilance course hosted by UMC in Uppsala.- EuroRec should create awareness within its network of National ProRec centres. Lombardia Informatica SpA (from the Lombardia Region) and INSERM (Public French Institute) are expected to promote SALUS concepts and options to their regional and/or national authorities.

Roche on the other hand, being involved in several project addressing the issue of pharmacovigilance and being a directly interested party to profit from the SALUS project, is to create awareness within the EFPIA organisation of pharmaceutical industries.

5.9 Metrics A set of data have been defined and collected to evaluate and improve progressively the effectiveness of the communication and dissemination activities. The following data are listed as potential indicators of appropriateness of communication and dissemination activities:

• Number of Web Site visitors • Average number of pages opened by the web site visitors • Number of requests for information

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• Number of downloads • Number of peer-reviewed publications • Number of other publications • Number of presentations at SALUS Workshops or at Conferences • Number of attendees at SALUS Workshops or at Conferences • Number of Conferences with a SALUS delegation • Number of SALUS collaborators present at Conferences • Number of meetings / contacts1 with National and/or International Drug Agencies • Number of meetings / contacts with Public Health Agencies • Number of meetings / contacts with Pharmacovigilance Institutes • Number of meetings / contacts with CROs • Number of meetings / contacts with Pharmaceutical Industry • Number of meetings / contacts with EHR system providers • Contacts with Healthcare Professionals

A number of these indicators might be into one or two indicators, e.g. public authorities and private parties.

1 A contact can be a meeting or even a request for information regarding the project or regarding a specific domain related aspect.

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6 DISSEMINATION ACTIVITIES In this section we report the dissemination activities of the project. In order to provide an exhaustive overview of all events where SALUS partners were involved since the beginning of the project until the end of this reporting period, the following listings comprise: - a short reference to each activity that has taken place in the previous reporting period

(typically without an Abstract/Content paragraph); - a full description of the activities that took place in this reporting period (typically with an

Abstract/Content paragraph included). By presenting activities in such way we keep a longitudinal overview of the activities, while at the same time stressing the activities from this reporting period.

The first step, even before the start of the project, was to create a mark, a visual identity, developing a logo and document style.

Other types of activities, such as publications and presentations followed during the course of the project.

6.1 Logo and SALUS Image Creating and using consistently a SALUS Style is a first step toward improving awareness through enhancing recognisability of the project. The following identity material was created and made available from the start of the project: - Logo - Presentation template (potx file) - Deliverable template (dotx file)

Two logos have been designed for SALUS Project. One with the Project full name, another a more compact one including only the Logo image.

Figure 1: SALUS Logo: extended

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Figure 2: SALUS Logo: reduced The standard colour used in the SALUS Logo and the text is:

RGB: 4, 160, 185 HTML: #04A0B9

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6.2 SALUS Web Site The Project Web Site was on line at the very early stage of the project, as documented in Deliverable D1.1.1. (Month 2)

Figure 3: SALUS Web Site Home Page (http://www.salusproject.eu)

SALUS Web Site is composed of two parts: the public SALUS Web site and the restricted Document Management site. The public Web site aims to give an overview of SALUS project presenting its objectives, work packages, partners, and to present latest achievements through

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the respective public SALUS deliverables, publications and dissemination material. SALUS events will also be announced through SALUS Web site. It also provides references to open source SALUS components and prototype demonstrations. SALUS Web site also hosts a restricted Document Management site, to be used by SALUS partners as a virtual file manager to collaboratively work on SALUS documents and share information. It is a living document archive of SALUS project.

Partners are requested to promote awareness of the project and public exposure of the web site by providing a link to the SALUS web site on their own web site.

6.3 Twitter Account The Consortium started a twitter account as a complementary way to improve communication. The account is: https://twitter.com/SALUSProject_EU. The number of followers is expected to increase and to give an indication on the communication and dissemination activities of the consortium.

Figure 4: SALUS Twitter Account

6.4 Google+ Profile The consortium has a Google+ profile: https://plus.google.com/u/0/115735001413164059789/

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Figure 5: SALUS Google+ page

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6.5 Publications

6.5.1 International peer-reviewed

6.5.1.1 Publication in the Journal "IEEE Transactions on Information Technology in Biomedicine", March 2013

Title of the paper: “Providing Semantic Interoperability between Clinical Care and

Clinical Research Domains”. Authors: Gokce B. Laleci Erturkmen, Asuman Dogac, Mustafa Yuksel (SRDC)

Note: Paper was published in the "IEE Transactions on Information Technology in

Biomedicine" Journal; Volume: 17, Issue: 2, March 2013 (online since Sept. 2012), Page(s): 356-369. The full version of the paper is available at the SALUS web site: http://srdc.com.tr/publications/2012/SALUSSemanticInteroperability.pdf

Abstract: see D2.2.1

6.5.1.2 Publication in the Journal of Biomedical Informatics, October 2013

Title of the paper: “A Federated Semantic Metadata Registry Framework for Enabling Interoperability across Clinical Research and Care Domains”.

Authors: Ali Anil Sinaci; Gokce B. Laleci Erturkmen

Note: Paper was published in the “Journal of Biomedical Informatics”, Volume 46, Issue 5, October 2013, Pages 784-794, ISSN 1532-0464 The full version of the paper is available at::

http://dx.doi.org/10.1016/j.jbi.2013.05.009. http://www.sciencedirect.com/science/article/pii/S1532046413000750

Abstract: In order to enable secondary use of Electronic Health Records (EHRs) by

bridging the interoperability gap between clinical care and research domains, in this paper, a unified methodology and the supporting framework is introduced which brings together the power of metadata registries (MDR) and semantic web technologies. We introduce a federated semantic metadata registry framework by extending the ISO/IEC 11179 standard, and enable integration of data element registries through Linked Open Data (LOD) principles where each Common Data Element (CDE) can be uniquely referenced, queried and processed to enable the syntactic and semantic interoperability. Each CDE and their components are maintained as LOD resources enabling semantic links with other CDEs, terminology systems and with implementation dependent content models; hence facilitating semantic search, much effective reuse and semantic interoperability across different application domains. There are several important efforts addressing the semantic interoperability in healthcare domain such as IHE DEX profile proposal, CDISC SHARE and CDISC2RDF. Our architecture complements these by providing a framework to interlink existing data element registries and repositories for multiplying their potential for semantic interoperability

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to a greater extent. Open source implementation of the federated semantic MDR framework presented in this paper is the core of the semantic interoperability layer of the SALUS project which enables the execution of the post marketing safety analysis studies on top of existing EHR systems.

6.5.2 Other Publications, Articles, Newsletters, Press Releases

6.5.2.1 Communication published in the Uppsala Reports (1)

Title of the communication: “SALUS lift off in Istanbul”.

Authors: Tomas Bergvall (UMC) on behalf of the SALUS Consortium

Note: This short communication was published in the Uppsala Reports, Sweden (Uppsala Report, No 57, April 2012), which is a newsletter reaching about 3.000 subscribers.

http://www.srdc.com.tr/projects/salus/docs/UppsalaReportApril2012.pdf

Content: see D2.2.1

6.5.2.2 Communication published in the Uppsala Reports (2) Title of the communication: “Providing Semantic Interoperability between Clinical

Care and Clinical Research Domains”.


Note: This short communication was published in the Uppsala Reports, Sweden, which is a newsletter reaching about 3.000 subscribers.

Content: see D2.2.1

6.5.2.3 Communication published in OFFIS Data Work Title of the communication: “Providing Semantic Interoperability between Clinical

Care and Clinical Research Domains”.

Authors: Marco Eichelberg on behalf of the SALUS Consortium

Note: This short communication was published in the OFFIS Data Work, No 54, June 2012

http://www.srdc.com.tr/projects/salus/docs/OFFIS_datawork54_01.pdf

Content:

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6.5.2.4 Communication published in the Uppsala Reports (3) Title of the communication: “Linking the unlinkable”.


Note: This short communication was published in the Uppsala Reports, Sweden

(Uppsala Report, No 59, October 2012) which is a newsletter reaching about 3.000 subscribers.

Content: Pre-approval clinical trials cannot guarantee that drugs will not have serious side effects after they are marketed. Post-approval drug safety data studies aim to address this problem, however, their effectiveness is questioned especially after recent examples of drug withdrawals. A contributing reason is that current post market safety studies largely depend on the submission of spontaneous case reports where underreporting is a major problem. The need for a more proactive approach is apparent, where safety data from multiple sources are actively monitored, linked and analyzed. Effective integration and utilization of electronic health records (EHR) can help to improve post-market safety activities on aproactive basis. SALUS (see UR57, p17 for introduction) aims to facilitate this through providing functional interoperability profiles and supporting open source toolsets enabling EHR systems and clinical research systems to communicate and exchange EHR data.

Figure 6: An article in the Uppsala Reports, October 2012

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6.5.2.5 Communication published in the Uppsala Reports (4)

Title of the communication: “Linking patient data”.

Authors: Hanna Lindroos (UMC) on behalf of the SALUS Consortium

Note: This short communication was published in the Uppsala Reports, Sweden, which is a newsletter reaching about 3.000 subscribers. Uppsala Report, No 62, July 2013

Content: Scalable, Standard based Interoperability Framework for Sustainable

Proactive Post Market Safety Studies – SALUS for short - is an international research effort funded by the EU. Participants from eight European countries are collaborating to connect the information found in electronic health records with that from existing spontaneous reporting systems.

The grand plan The SALUS project aims to create the necessary infrastructure to enable use of electronic health records to reinforce the existing post-market safety studies. In particular the project aims to:

• Strengthen the spontaneous reporting process by automated adverse drug event (ADE) detection tools screening electronic health records in a hospital to alert physicians of potential safety problems.

• Enable ADE reporting by extracting available information from the electronic health records into an individual case safety report to avoid double data entry.

• Strengthen the current signal detection processes by leveraging the strengths of both electronic health record and spontaneous reporting systems. This can be done by tracing case reports to their corresponding patient records to allow absolute reporting rates to be computed.

• Enable secondary use of electronic health record data by using a common semantic architecture for all data sources.

Why use electronic health records? Pre-approval clinical trials are not sufficient to ensure that a drug will be safe to use once it arrives on the market. Post-marketing safety analysis can give a more detailed picture of the drug standard. Spontaneous case reports are the main source of information for current post-market safety studies, but due to underreporting they do not provide enough information to verify drug safety. Although electronic health records are primarily used for patient care, they contain a broad range of clinical information relevant for safety analysis. Effective integration and utilization of electronic health record data with already-existing spontaneous reporting systems can complement and strengthen existing post-marketing safety activities. Meeting in Uppsala

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In June UMC hosted a three-day meeting with 18 SALUS collaborators. The first two days were devoted to resolving the technical aspects of the project. The different applications and systems that are being produced within the project were demonstrated and discussed in great detail. Two productive days of intense discussions were ended at the Biztron restaurant where the participants enjoyed a meal to the strains of a jazz ensemble. On Wednesday the participants met to review several of the project tasks and issues concerning the whole consortium were raised and discussed. Project partners The project partners are Software Research and Development and Consultancy Ltd (SRDC, Turkey), the European Institute for Health Records (EuroRec, France), the UMC (Sweden), the Oldenburg Research and Development Institute for Information Technology Tools and Systems (OFFIS, Germany), Agfa (Belgium), Electronic Record Services (Netherlands), Lombardia Informatica (LISPA, Italy), the Institut National de la Santé et de la Recherche Médicale (INSERM, France), the Dresden Institute of Technology (Germany), and F. Hoffmann – La Roche(Switzerland). For more info about the SALUS project, see http://salusproject.eu/

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Figure 7: An article in the Uppsala Reports, July 2013

6.5.2.6 Ph.D. Thesis defended, May 8 2013 Title of the Thesis: “A Semantic Interoperability Framework for Reinforcing Post Market

Safety Studies”

Author: Mustafa Yuksel

Note: The thesis was defended on May 8, 2013 at the Middle East Technical University, Ankara, Turkey (www.metu.edu.tr)

Content:

Depending mostly on voluntarily sent spontaneous reports, pharmacovigilance studies are hampered by low quantity and quality of patient data. Enabling safety analysts to seamlessly access a wide range of Electronic Health Record (EHR) sources for collecting de-identified medical data sets of selected patient populations and tracing the reported incidents back to original EHRs can provide major improvements for such post market safety studies. The adoption of EHR systems and data exchange among these systems are rapidly increasing due to a number of national and cross-border initiatives. Although the main priority of these systems is improving clinical care, we demonstrate that the same systems and interfaces can be exploited for post market safety studies as well.

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We have developed an ontological framework where EHR sources and target clinical research systems can continue to use their own local data models, interfaces and terminology systems; while both structural and semantic interoperability are handled through rule-based reasoning on formal representations of different models and terminology systems maintained in our Semantic Resource Set. The Common Information Model at the core of this set acts as the common mediator. Our semantic interoperability framework for post market safety studies is scalable. The quantity and quality of the information provided through our framework to the safety analysts is a significant improvement compared to traditional methods. Semantically mediating all the patient data and terminology systems in formalized representations allows us to extend the capabilities of our tools easily.

6.5.2.7 Master Thesis defended, June 2013 Title of the Thesis: “An Extensible Security Infrastructure for The Secondary Use Of Electronic

Health Records In Clinical Research”

Author: Elif Eryilmaz

Note: The thesis was defended on June, 2013 at the Middle East Technical University, Ankara, Turkey (www.metu.edu.tr)

Content:

In order to facilitate clinical research studies re-using Electronic Health Records (EHR) has a great potential. Besides interoperability, safeguarding the security and privacy of the medical data in the context of secondary use for clinical research is one of the most important challenges in this respect. In order to ensure that the clinical information is shared among EHR systems and clinical research systems in an ethical and safe way, there needs to be standards-based and adaptable security and privacy mechanisms that can be used by both clinical care and clinical research parties in an interoperable manner by taking into account policies, consent and use agreements of the participating parties. In this thesis, an extensible security infrastructure has been developed that supports re-use of the EHRs for strengthening the post-approval drug safety studies in the area of clinical research. This work involves the implementation of the security architecture, including novel data protection mechanisms applied to the queried clinical instances as well as additional security services compatible with standard profiles that guarantees the safe use of EHRs for the clinical research studies. In conformance to the selected standards, guidelines, and well-accepted methodologies, this thesis has addressed to find a balance between the privacy concerns for the use of personal data and the requirements of clinical research environments that aim to serve to the public good. In this respect, flexible security architecture is designed and made configurable for the Data Protection Offices of EHR sources according to their preferences.

6.5.2.8 An article for the book »eHealth 2014« Title of the article: “Sekundärnutzung klinischer Patientenakten – Semi-automatische Detektion

von Medikamentennebenwirkungen”

Author: Tobias Krahn, Frerk Müller, Marco Eichelberg, Andreas Hein, H.-Jürgen Appelrath

Note: An article for the book (pages 120-126) »eHealth 2014«

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Content:

The book article presents the SALUS project focusing on the ADE Notification Tool. After briefly summarizing the objectives of our project, the state of the art in ADE detection is described. The remainder of that article presents the ADE Notification Tool, designed detection rules as well as initial implementation results.

6.5.2.9 Publication on //arXiv.org, October 15, 2013 Title of the publication:

Validation Rules for Assessing and Improving SKOS Mapping Quality

Author: Hong Sun, Jos De Roo, Marc Twagirumukiza, Giovanni Mels, Kristof Depraetere, Boris De Vloed, Dirk Colaert

Note: The full version of the paper available at: http://arxiv.org/abs/1310.4156

Abstract:

The Simple Knowledge Organization System (SKOS) is popular for expressing controlled vocabularies, such as taxonomies, classifications, etc., for their use in Semantic Web applications. Using SKOS, concepts can be linked to other concepts and organized into hierarchies inside a single terminology system. Meanwhile, expressing mappings between concepts in different terminology systems is also possible. This paper discusses potential quality issues in using SKOS to express these terminology mappings. Problematic patterns are defined and corresponding rules are developed to automatically detect situations where the mappings either result in ‘SKOS Vocabulary Hijacking’ to the source vocabularies or cause conflicts. An example of using the rules to validate sample mappings between two clinical terminologies is given. The validation rules, expressed in N3 format, are available as open source.

6.6 Conferences Stimulated by the list of potential events published on the SALUS web site (see Annex 4), and upon the initiatives of the individual partners in the consortium, the project has been presented at several events. The hereby listed items comprise presenting/giving papers, posters and presentations at the conferences, as well as active attendance at the conferences or workshops on medical informatics and/or pharmacovigilance. We are not listing in this deliverable the presentations and/or interventions done at collaborating project meetings, as e.g. EHR4CR meetings.

6.6.1 Papers, Posters and Presentations at Conferences

6.6.1.1 SIMI 2012 Paper – Crete, Greece, May 2012

Title of the paper: Building the Semantic Interoperability Architecture Enabling Sustainable Proactive Post Market Safety Studies

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Authors: Gokce B. Laleci Erturkmen, Asuman Dogac, Mustafa Yuksel, Sajjad Hussain,

Gunnar Declerck, Christel Daniel, Hong Sun, Kristof Depraetere, Dirk Colaert, Jos Devlies, Tobias Krahn, Bharat Thakrar, Gerard Freriks, Tomas Bergvall, Ali Anil Sinaci

Note: The paper was submitted and accepted as a short presentation to the “Extended

Semantic Web Conference 2012” in Crete, Greece, May 27-31, 2012.

The full text of the paper is available on the website of SRDC http://www.srdc.com.tr/projects/salus/docs/SALUSSIMIPaperFinal.pdf and on the SALUS Website \Dissemination Materials.


6.6.1.2 SIMI 2012 Poster - Crete, Greece, May 2012 SALUS was also represented by a poster in the poster session. The poster is added in Annex 2 and available on the web site of SRDC as well as on the SALUS web site \Dissemination Materials. http://www.srdc.com.tr/projects/salus/docs/poster_SALUS_SIMI2012.pdf

6.6.1.3 MIE 2012 Conference Paper – Pisa, Italy, August 2012 Title of Paper / Publication: SALUS: Scalable, Standard based Interoperability Framework for

Sustainable Proactive Post Market Safety Studies Authors: Gokce B. Laleci Erturkmen, Asuman Dogac, Mustafa Yuksel Note: A presentation was given on August 29, 2012 by Dr. Gokce B. Laleci Erturkmen with

as title “SALUS: Scalable, Standard based Interoperability Framework for Sustainable Proactive Post Market Safety Studies” in the Track 04.03 “Enhancing Research and Trials”.

The full text as well as the slides are available on the SALUS Web Site site \Dissemination Materials.

Information about the MIE2012 is available on www.mie2012.it


6.6.1.4 A Tutorial at International Conference on Very Large Databases (VLDB) - Istanbul, Turkey, November 2012

Title of the presentation: Interoperability in eHealth Systems (Tutorial) Author: Prof. Dr. Asuman Dogac (SRDC)

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Note: Prof. Dr. Asuman Dogac has given a tutorial on “Interoperability Issues in eHealth Domain”. Interoperability challenge between clinical care and research domain was one of the main topics addressed. SALUS technical and semantic interoperability solutions have been presented to the audience. Around 50 people attended the Tutorial. (More on the conference and tutorial: http://www.vldb2012.org/)

6.6.1.5 A Presentation at ApacheCon EU - Sinsheim, Germany; November 2012

Title of the presentation: Jena based Implementation of a ISO 11179 Meta-data Registry Author: A. Anil Sinaci, M.Sc. (SRDC) Note: Author presented the design and initial implementation of CDE Repository at the

Linked Data Track of the ApacheCon EU conference in Germany http://www.apachecon.eu/ Description and Abstract of the presentation: http://www.apachecon.eu/schedule/presentation/66/ The presentation: http://www.slideshare.net/sinaci/jena-based-implementation-of-a-iso-11179-meta-data-registry-15066461

6.6.1.6 A Position paper at SWAT4LS Workshop - Paris, France; November 2012

Title of the paper: Semantic-sensitive extraction of EHR data to support adverse drug event reporting

Authors: Gunnar Declerck, Sajjad Hussain, Yves Parès, Christel Daniel, Mustafa Yuksel, Ali

Anil Sinaci, Gokce Banu Laleci Erturkmen, Marie-Christine Jaulent (all INSERM UMRS and SRDC)

Note: The authors submitted a position paper describing ICSR reporting tool to the

SWAT4LS Workshop, held in Paris on November 30th, 2012 (http://www.swat4ls.org/workshops/paris2012/) The full version of the paper is available at the SALUS web site: http://www.srdc.com.tr/projects/salus/docs/ICSR_Reporting_Tool_SWAT4LS_V2.


6.6.1.7 AMIA 2013 Clinical Research Informatics Summit Panel – San Francisco, USA, March 2013

Title of the paper: Standard-based integration profiles for clinical research and patient safety Authors: Christel Daniel, MD, PhD, Gokce Banu Laleci Erturkmen, PhD , Ali Anil Sinaci,

MSc , Brendan C Delaney, BM, BCh, MD, Vasa Curcin, PhD, Landen Bain

Note: Together with EHR4CR and TRANSFoRm projects, we have prepared a panel discussion proposal on "Standard-based integration profiles for clinical research and

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patient safety" for 2013 AMIA Clinical Research Informatics Summit, to be held on March 20-22 in Boston, USA. http://www.amia.org/jointsummits2013

Summary of Event:

EHRs can now be adapted to integrate seamlessly with existing research platforms. However, key challenges need to be overcome in order to provide a platform that functions across many EHR systems. The IHE Quality, Research and Public Health (QRPH) domain addresses the information exchange standards necessary to share information relevant to quality improvement in patient care and clinical research. In collaboration with CDISC’s Healthcare Link initiative, IHE QRPH has developed a set of integration profiles that specifically address EHR-enabled research. The panel participants from three European projects will present how subsets of existing IHE QRPH profiles can be pulled together (and extended when necessary) to form a super profile which will standardize and automate the clinical trial process flow. The EHR4CR project is providing adaptable, reusable and scalable tools and services for reusing data from hospital EHRs for Clinical Research. TRANSFoRm is developing an informatics infrastructure to support the learning healthcare system in European Primary Care. SALUS project is providing scalable, standard based interoperability framework for sustainable proactive post market safety studies. Overall, the panel will discuss the key steps towards realizing a joint EHR4CR/TRANSFoRm/SALUS European projectathon demonstrating EHRenabled clinical research across Europe using standard-based integration and content profiles.

6.6.1.8 MedeTel 2013 Conference paper - Luxemburg, April 2013

Title of the paper: Security and Privacy Issues for enabling the Secondary use of EHRs in Clinical Research

Authors: Elif Eryilmaz, Gokce B. Laleci Erturkmen (SRDC) Note: The authors submitted an abstract to MedeTel 2013 conference about SALUS

Security/Privacy architecture, which has been accepted for presentation.

Abstract: Re-using Electronic Healthcare Records (EHR) for facilitating clinical research studies has a great potential. Besides interoperability, safeguarding the security and privacy of the medical data in the context of secondary use for clinical research is one of the most important challenges in this respect. In this presentation we will introduce the SALUS security architecture, including de-identification and pseudonymization mechanisms applied to the queried clinical instances as well as additional security services compatible with IHE ATNA Profile that guarantees the safe use of EHRs for the clinical research studies.

6.6.1.9 MedInfo 2013 Conference paper - Copenhagen, Denmark; August 2013

Title of the paper: Building a time-saving and adaptable tool to report adverse drug events

Authors: Yves Parès, Gunnar Declerck, Sajjad Hussain, Romain Ng, Marie-Christine Jaulent (INSERM)

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Note: Authors submitted a paper for MedInfo 2013 conference, Copenhangen, August 2013, describing the design, state of realization and plans for the ICSR reporting tool. It extends previous paper for the SWAT4LS workshop. http://www.medinfo2013.dk/IMIA

The Paper was published in: Lehmann, C.U., Ammenwerth, E. & Nøhr, C. (Eds), Medinfo 2013: Proceedings of the 14th World Congress on Medical and Health Informatics, 10-23 August 2013, Copenhague, Danemark, Studies in health technology and informatics, 192, pp. 903-907. IOS Press.

Abstract: The difficult task of detecting adverse drug events (ADEs) and the tedious process of building manual reports of ADE occurrences out of patient profiles results in a majority of adverse reactions not being reported to health regulatory authorities. The SALUS individual case safety report (ICSR) reporting tool, a component currently developed within the SALUS project, aims at supporting semi-automatic reporting of ADEs to regulatory authorities. We present its initial design and current state of realization. The features it brings are (i) automatic pre-population of reporting forms through extraction of the patient data contained in an Electronic Health Record (EHR), (ii) generation and electronic submission of the completed ICSRs by the physician to regulatory authorities and (iii) integration of the reporting process into the physician's work-flow to limit the disturbance. The objective is to increase the rates of ADE reporting and the quality of the reported data. The SALUS interoperability platform supports patient data extraction independently of the EHR data model in use and allows generation of reports using the format expected by regulatory authorities.


Title of the paper: Semi-automatiser la déclaration d'évènements indésirables médicamenteux à l’aide d’une plateforme d'interopérabilité

Authors: Yves Parès, Gunnar Declerck, Sajjad Hussain, Romain Ng, Marie-Christine Jaulent (INSERM)

Note: Authors submitted a paper for MedInfo 2013 conference, Copenhangen, August 2013, FRSIGIMIA session. http://www.medinfo2013.dk/IMIA

Abstract: The reasons behind adverse drug events (ADE) getting underreported by medical professionals are overlooking complex drug reactions and dealing with cumbersome manual process of reporting ADE based on patient profiles. We present an initial design of SALUS ICSR reporting tool that supports the reporting of ADE to regulatory authorities with services (i) enabling automatic prepopulation of reporting forms by extracting patient data from EHR and (ii) presenting pre-filled reporting forms to medical professionals for further completion and validation. The main objective of this tool is to ease the process of filling ADE reporting forms and increase the quality of reported data. To enable the compatibility of our reporting tool with heterogeneous EHR data models, SALUS interoperability platform supports the patient data extraction process and ensures the reporting of ADE in a standardized format expected by regulatory authorities.

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Title of the paper: An Extensible Security Infrastructure for the Secondary Use of EHRs represented in HL7 Clinical Document Architecture for Clinical Research

Authors: Elif Eryilmaz, Gokce B. Laleci Erturkmen (SRDC) Note: The authors submitted a paper to MedInfo 2013 conference about SALUS

Security/Privacy architecture.

Abstract: Re-using Electronic Healthcare Records (EHR) for facilitating clinical research studies has a great potential. Besides interoperability, safeguarding the security and privacy of the medical data in the context of secondary use for clinical research is one of the most important challenges in this respect. In order to ensure that the clinical information is shared among EHR systems and clinical research systems in an ethical and safe way, there needs to be standards-based and adaptable security and privacy mechanisms that can be used by both clinical care and clinical research parties in an interoperable manner. In this respect, we aim to develop an extensible security infrastructure that supports re-use of the EHRs represented in t HL7 Clinical Document Architecture (CDA) format for strengthening the post-approval drug safety studies in the area of clinical research. Our work involves implementation of the security architecture, including novel data protection mechanisms applied to the queried clinical instances represented in CDA as well as additional security services compatible with standard profiles that guarantees the safe use of EHRs for the clinical research studies.

6.6.1.12 GMDS 2013 Conference paper - Lübeck, 01-05 September 2013

Title of the paper: Detektion unerwünschter Arzneimittelereignisse – Transparenzsteigerung in der Versorgungsforschung (detection of ADEs – enhancing the transparency in the context of health services research)

Authors: Tobias Krahn; Frerk Müller; Prof. Dr. Dr. h.c. H.-Jürgen Appelrath Note: The authors submitted a paper to the GMDS 2013 - 58. Jahrestagung der Deutschen

Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie (GMDS) e.V. (http://www.gmds2013.de/) http://www.egms.de/static/en/meetings/gmds2013/13gmds081.shtml

6.6.1.13 “The value of Real World Evidence (RWE) Conference” Session / Oral Presentation - Dublin, Ireland, 03 Sept. 2013

Title of the conference: The value of Real World Evidence (RWE) - will availability of data

lead to a paradigm change. // Industrial Pharmacy Section & Pharmacy Information Section

Title of the presentation: Real World Evidence, a substitute for pharmacovigilance reporting

and safety documentation? Authors: Niklas Norén Note: The authors presented at the conference with approx. 200 participants.

(http://www.fip.org)

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Abstract: Over the past forty years, individual case reports of suspected harm from medicines

have remained the primary basis to discover previously unknown adverse drug reactions. Their strengths and limitations are well-described: they draw on the expertise and experience of the reporting health professional or patient in identifying the abnormal and in soliciting the necessary information for a solid safety assessment. This makes them particularly suitable for adverse reactions with low background frequency or with clinical features that suggest an association between exposure to the drug and the adverse event. Longitudinal observational data including patient records and claims are a common resource for confirmatory pharmacoepidemiological studies. There is now growing interest in exploring their use for adverse drug reaction surveillance, with international initiatives such a PROTECT, EU-ADR, FDA’s Sentinel Initiative, and the Observational Medical Outcome Partnership. Like case reports, longitudinal observational data reflect the effects of medicines in real-world clinical practice. One key advantage is that they provide information on the total number of patients exposed to a medicine over extended periods of time so that recording rates of medical events can be compared across treatments (or to unexposed controls), as well as between before and after drug exposure in the same cohort. A main limitation is that information is collected primarily for reimbursement or patient management, and may not allow for proper causality assessment in the individual case. For this reason, the real opportunity may be in a framework for tracing case reports to their corresponding patient records, as is currently being explored in the European SALUS project. This would combine the strengths of each data type and allow for much more effective adverse drug reaction surveillance.

6.6.1.14 DKVF 2013 - 12. Deutscher Kongress für Versorgungsforschung Conference Paper - Berlin, 23-25 Oktober 2013

Title of the paper: Transparenz unerwünschter Arzneimittelwirkungen (transparency of ADRs) Authors: Tobias Krahn; David Saß; Prof. Dr. Dr. h.c. H.-Jürgen Appelrath Note: Conference organised by Deutsches Netzwerk Versorgungsforschung e.V.

(http://dkvf2013.de/)

Abstract: The paper describes our approach to detect ADRs in respect of task 6.1. The main points are:

- Detection of known ADEs: Import of knowledge about already known ADEs, identification by standardized coding systems like ICD and ATC-Codes - Detection rules repository: Detection of ADRs by further parameters, like the surveillance of lab parameters - Detection of unknown ADRs: Based on the whole EHR database of a clinic, data mining is performed to detect unknown ADEs.

6.6.1.15 SWATLS 2013, International Workshop on Semantic Web Applications and Tools for

Life Sciences - Edinburgh, UK, 10 December, 2013

Title of the paper:

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Demonstration of the SALUS Semantic Interoperability Framework for Case Series Characterization Studies

Authors: Mustafa Yuksel, Suat Gonul, Gokce Banu Laleci Erturkmen, Ali Anil Sinaci, Kristof

Depraetere, Jos De Roo, Tomas Bergvall Note: For more info see: http://www.swat4ls.org/workshops/edinburgh2013/

Abstract:The work aimes to demonstrate the interoperability framework developed in the SALUS project which enables effective integration and utilization of EHR data to reinforce post-market safety activities.



Title of the paper: Patient History Navigation with the Use of Common Data Elements

Authors: A. Anil Sinaci, Gokce B. Laleci Erturkmen, Suat Gonul, H. Alper Cinar, Atakan

Kaya Note: For more info see: http://www.swat4ls.org/workshops/edinburgh2013/

Abstract: With this work, we demonstrate SALUS Patient History Tool which presents patient summaries to the clinical researcher by retrieving the values of the patient data fields from the semantic instances which come in the form of SALUS Common Information Model. The tool makes use of the SALUS Common Data Elements to extract the corresponding data from the semantic in-stance before presenting to the researcher. In addition, this work demonstrates the use of the IHE DEX profile in clinical settings for a real world scenario coming from the SALUS project.



Title of the paper: Assessing and Improving SKOS Mapping Quality, Authors: Hong Sun, Jos De Roo, Giovanni Mels, Kristof Depraetere, Marc Twagirumukiza,

Boris De Vloed, Dirk Colaert, Note: Approximately 80 participatants attended the workshop.

The full version of the poster is available at http://ceur-ws.org/Vol-1114/Poster_Sun.pdf.

See also http://www.swat4ls.org/workshops/edinburgh2013

Abstract: The Simple Knowledge Organization System (SKOS) is popular for expressing controlled vocabularies for their use in Semantic Web applications. Using SKOS, concepts can be linked to other concepts and organized into hie-rarchies inside a single terminology system. Meanwhile, expressing mappings between concepts in different terminology systems is also possible with SKOS mapping properties. This

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poster discusses potential quality issues in using SKOS to express terminology mappings. Problematic patterns are defined and corresponding rules are developed to automatically detect situations where the mappings either result in ‘SKOS Vocabulary Hijacking’ or cause conflicts. The validation rules, expressed in N3 format, are available as open source.

6.6.1.18 AMIA 2014 Joint Summits on Translational Science, San Francisco, USA, 7-11 April, 2014

Title of the paper:

Standard-based EHR-enabled applications for clinical research and patient safety: CDISC – IHE QRPH – EHR4CR & SALUS collaboration,

Authors: Christel Daniel, Anil Sinaci, David Ouagne, Eric Sadou; Gunnar Declerck, Dipak Kalra, Jean Charlet, Kerstin Forsberg, Landen Bain, Charlie Mead, Sajjad Hussain, Gokce B. Laleci Erturkmen

Note: Paper was accepted to be presented.

http://www.amia.org/jointsummits2014

Abstract: Historical efforts focused on integrating data from Electronic Health Records (EHRs) with clinical research and pharmaco-vigilance are based on a set of “integration profiles” collaboratively developed by CDISC and IHE. However, these profiles are limited to resolving lexical/syntactic data integration issues and do not address semantic barriers. This paper describes the collaboration between two European projects – EHR4CR and SALUS – in implementing standards-based metadata registries (MDRs) and semantically integrated cross platform data access.

Both the EHR4CR and SALUS projects are based on project-specific MDRs developed in compliance with ISO/IEC 11179. An additional, common “semantic MDR” provides a framework for bi-directional/cross-MDR mapping. Federated queries are enabled and managed using the newly-defined IHE Data Exchange (DEX) profile as an interface to the semantic MDR.

Project-specific EHR4CR and SALUS MDRs contain data element definitions and mappings of these elements to semantically equivalent structures in participating EHR systems. In the pilot implementations, mappings for 178 EHR4CR and 199 SALUS metadata elements were persisted in the semantic MDR. The DEX profile was then used to manage federated queries accessing semantically equivalent cross-platform data elements.

Used in concert, ISO/IEC 11179-based MDRs and the DEX integration profile demonstrate the “next step” in achieving the goal of developing pan-EU computable semantic integration of data from clinical care, clinical research, and patient safety platforms.

6.6.2 Attendance at Conferences

In this section all attendance to international conferences and/or workshops on medical informatics and/or pharmacovigilance are reported.

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Partner Date (yyyy/mm) Name of the Conference / Workshop - Title Location Country Number

attending

SDRC 2012/05 Extended Semantic Web Conference 2012 Crete, Greece 1 SDRC 2012/08 MIE2012 Pisa, Italy 1 ERS 2012/08 MIE 2012 Pisa, Italy 2

ROCHE 2012/08 28th International Conference on

Pharmacoepidemiology & Therapeutic Risk Management in Barcelona,

Barcelona, Spain 2

SRDC 2012/11 ApacheCon EU Sinsheim, Germany 1

INSERM 2012/11 SWAT4LS Workshop Paris, France 2

AGFA 2013/2 Post Market Surveillance Berlin, Germany 2

AGFA 2013/3 HIMMS 2013 New Orleans, USA 1

AGFA 2013/3 EC Convergence conference Brussels, Belgium 1

SRDC 2013/3 6.6.1.7 AMIA 2013 Clinical Research Informatics Summit Panel

San Francisco, USA 1

SRDC 2013/4 Medetel 2013 Luxemburg, Luxemburg 1

INSERM 2013/8 MedInfo 2013 Copenhagen, Denmark 1

OFFIS 2013/09

GMDS 2013 - 58. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie

(GMDS)

Lubeck, Germany 1

UMC 2013/9 “The value of Real World Evidence (RWE) Conference Dublin, Ireland 1

OFFIS 2013/10 6.6.1.13 DKVF 2013 - 12. Deutscher Kongress für Versorgungsforschung Berlin, Germany 1

AGFA 2013/12 SWATLS 2013, International Workshop on Semantic Web Applications and Tools for

Life Sciences - Edinburgh, UK, 1

SRDC 2013/12 SWATLS 2013, International Workshop on Semantic Web Applications and Tools for

Life Sciences - Edinburgh, UK, 1

6.7 Presentations to authorities LISPA in function of statutory relationship with Lombardy Region presented the project Salus to Regional Government Health Ministry. LISPA met in May 31st 2012 Dr. Luca Merlino, Health Ministry vice director, Dr. Alma Lisa Rivolta Regional Pharmacovigilance Office Director. Dr. Merlino asked to the Regional Pharmacovigilance Office to cooperate and support Lispa in the project. On December 18th 2012 an informal meeting took place with Dr. Fernanda Ferrazin Post Marketing Surveillance Department Coordinator, Head of Pharmacovigilance Office (AIFA). During the meeting Dr. Ferrazin proposed to organize a work shop with AIFA in second semester 2013. In 2013, the collaboration with the regional pharmacovigilance center has been continuously carried out for specific SALUS activities. Several meetings and contacts have been organized and a good cooperation lead to important results for the definition of some ADE detection rules.

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Due to internal reorganization of AIFA personnel new contacts should be established towards the organization of national dissemination activities for SALUS such as a workshops addressed to authorities in charge of local, regional and national pharmacovigilance process. This workshop is planned for 2014. The SALUS project results will be directly presented to regional pharmacovigilance centers.

6.8 Presentations to other projects and convergence activities These activities are reported in Deliverable D2.4.1 and D2.4.2 on Cooperation and Collaboration.

6.9 Presentations to patient and healthcare organisations In addition to the dissemination materials of a more general nature, an Infosheet aiming at patient and healthcare organisations was prepared in 2013.

The Infosheet summarizes SALUS achievements and potential benefits for patients and healthcare professionals. It has been agreed that the dissemination would start in early 2014, through different channels, as widely as possible. A list of contact points for the patients and healthcare professionals across Europe has been gathered, as well as local contact points from each country. It will be also possible to disseminate these leaflets through Uppsala Report. 1,800 copies of Uppsala Reports are posted out and around 2,800 e-mails are sent out to individuals. See ANNEX 6 SALUS Infosheet for the Infosheet and for the List of patient and healthcare provider organizations to whom the Infosheet has been sent.

6.10 Dissemination Material The dissemination material is made available to the partners and to the public on the SALUS web site. The actual dissemination material consists of

• SALUS ID Card (SALUS Fact Sheet), available on the web. See also ANNEX 1 SALUS Fact Sheet.

• SALUS White Paper, available on the web site. See also . • Flyers • Brochures • Infosheet (see also Chapter 6.9)

6.11 Metrics The consortium expects to measure its communication and dissemination activities from the end of Year 1 on. For the Year 1 and Year 2 some key metrics have been recorded and listed in the following table:

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Observed period

Sep 2012 – Dec 2012

Jan/Feb 2013 – Jan 2014

Visits on the web site

829 2.874

Publications in Journals and Book Chapters

3 5

Papers, posters, presentations at conferences

6 in 2012 (Additional 1

presentation and 1 Panel submitted and accepted for

2013; and 2 conference

presentations submitted for 2013 awaiting decision)

11 in 2013; and 1 additional

paper was submitted and accepted for 2014

Table 3 Dissemination Metrics

A more detailed web page statistics have been produced for Q4 2012. They present data on visits to the project's web page, analysed by types of audience and location of the visitors.

Figure 8: Web page statistics – by Audience (Q4 2012)

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Figure 9: Web page statistics – by Location (Q4-2012)

In addition, a more detailed web page statistics have been produced for Q1-Q4 2013. They present data on visits to the project's web page, analysed by types of New vs Returning visitors, Language, and Blog audience.

Figure 10: Web statistics – New vs Returning (1 Feb 2013– 7 Jan 2014)

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Figure 11: Web statistics – Language Overview (1 Feb 2013 – 7 Jan 2014)

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Figure 12: Web statistics – Blog Audience Overview (1 Feb 2013 – 7 Jan 2014)

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ANNEX 1 SALUS FACT SHEET

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ANNEX 2 SALUS POSTER

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ANNEX 3 SALUS WHITE PAPER

SALUS White Paper (pages 1-2 and 11-12)

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ANNEX 4 DISSEMINATION REPORT TEMPLATE

Dissemination Report / Suggestion2 Purpose of the form

The form should be used to report/document as well as to suggest dissemination activities linked to the SALUS project. The form should be completed as far as relevant. A report should be completed with some attachments: e.g. paper/presentation given, publication or a report. The dissemination reports will be included in the D2.2 deliverables on Month 12, 24 and 36.

Partner submitting report / suggestion

Partner name: Personal name & first name:

Issue addressed

Journal Publication Advisory Board3

Conference Paper4 Conference Presentation

Conference Session Conference Flyer / Documentation

Exhibition Booth Workshop Organized

Presentation at a National Event Press and Dissemination material5

Presentation to the third parties (e.g. Industry) Title of Paper / Publication: Authors: Conference / Editor / Journal

• Date(s) • Location • Title Conference / Journal • Volume/Number/Page (in case of Journal publications) • Initiating organisation (in case of a conference) • Contact of editor or organisation(web, mail, address)

2 Select report or suggestion 3 Details in the “Summary” section: ID of the expert, contact data, motivation 4 Attending meetings of other projects should be reported as a “collaboration activity” 5 Newspapers, newsletters, press releases, brochures, etc…

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Other partners involved: Supporting external parties: Approximate number of persons attended (conference/workshops): Abstract of Paper/Presentation - Summary of Event:

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ANNEX 5 LIST OF EVENTS-CONGRESSES

Events - Congresses The SALUS list of events / congresses intends to inform the partners on possibly interesting events and/or conferences, either to get domain related input or to disseminate the SALUS options and developments. The focus of our dissemination activities clearly lays on pharmacovigilance. An attempt is made to classify the events:

DEV Medical devices eH eHealth (health IT in general) Reuse of data, EHR systems, IT Information Technology MED Medical Healthcare professional, Medical Practice PH Pharmacy and Pharmacology CT Clinical Trials VIG Pharmacovigilance I International E European N National * Less relevant, not specifically focused on pharmacovigilance ** Relevant *** The most relevant

The list will be update on regular basis.

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Date of the list: 2014-01-01 Date Acronym Conference Title / Description Location Web site

Main Focus

N/I Relevant

2012-04-18/20 Med@Tel Med@Tel by ISfTeH Luxembourg http://www.medetel.eu eH I ** 2012-05-7/9 WoHIT2012 World of Health IT Copenhagen www.worldofhealthit.org eH I *

2012-05-24/25 UMC UMC Research Conference 2012 – Causality assessment in an Evolving Pharmacovigilance Landscape. Uppsala, Sweden www.who-umc.org VIG I ***

2012-05-27/31 ESWC2012 9th Extended Semantic Web Conference Heraklion, Greece http://2012.eswc-conferences.org/ IT I **

2012-08-23/26 ICPE 2012 International Conference on Pharmaco-epidemilogy & Therapeutic Risk Management Barcelona, Spain http://www.pharmacoepi.org VIG I ***

2012-08-26/29 MIE 2012 Medical Informatics Europe Pisa, Italy www.mie2012.it www.efmi.org eH I *

2012-09-24/27 AAL Forum 2012 Ambient Assisted Living Forum 2012 Eindhoven, The

Netherlands www.aalforum.eu eH I **

2012-10-03/08 FIP 2012 Centennial FIP Congress – The Future of Pharmacy, be part of the creation!

Amsterdam, The Netherlands www.fip.org/amsterdam2012 PH I *

2012-10-08/12 DIA DIA Clinical Forum The Hague, The Netherlands

www.diaeurope.org VIG I **

2012-10-10/12 MedTech Eucomed MedTech Forum Brussels, Belgium www.medtechforum.eu DEV I * 2012-10-30/ 11-02 ISOP2012 International Society of Pharmacovigilance Annual

Meeting Cancun, Mexico www.isoponline.org VIG I **

2012-11-14/17 Medica 2012 Medica Düsseldorf, Germany www.medica.de IT I *

2012-11-18/20 HIMMS CIO HIMMS Europe CIO Summit Mallorca, Spain www.hitleadershipsummit.eu IT I *

2012-11-19/20 Interoperability Workshop organised by the Center of eHealth Sweden Lund, Sweden [email protected] eH E **

2013-01 DG Connect Concertation Meeting Secondaru Use of EHR data Brussels, Belgium

2013-02-18/22 EMA Excellence

EMA – Excellence in Pharmacovigilance – Clinical Trials and Post-Marketing – DIA Europe

London, United Kingdom

www.diahome.org VIG E ***

2013-03-3/7 HIMSS13 HIMSS13, the Annual Conference and Exhibition of Healthcare Information and Management Systems Society

New Orleans, USA http://www.himssconference.org IT I *

2013-03-4/6 DIA Euro 2013 DIA Euromeeting Amsterdam,

Netherlands http://www.diahome.org/en/Flagship-Meetings/13101-EuroMeeting.aspx VIG E ***

2013-04 P2T 2013 8ième Congrès P2T France www.congres-p2t.fr VIG N ** 2013-04 conHIT Conference of German IT vendors association Berlin, Germany www.cohit.de/en IT N *

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2013-04 Med@Tel Med@Tel by ISfTeH Luxembourg http://www.medetel.eu eH I **

2013-04-11/13 ISPE MidYear ISPE Mid-Year Meeting Munich, Germany http://www.pharmacoepi.org VIG I ***

2013-04-17/19 EFMI STC 2013 EFMI STC (Special Topic Conference) Prague, Czech

Republic http://www.stc2013.org/ IT E **

2013-04-18/19 BigData2013 (HISA)

Australia's Big Data in biomedicine and healthcare conference - biomedical informatics, personalised medicine, health 2.0/participatory health, data governance, data analytics and healthier outcomes.

Melbourne, Australia

http://www.hisa.org.au/page/bigdata2013 eH I *

2013-05-13/15 WoHIT2013 World of Health IT Dublin, Ireland www.worldofhealthit.org eH I **

2013-05 ECH European Connected Health Leadership Summit and mHealth Forum www.echcampus.com I *

2013-05- UMC UMC Research Conference 2013 Uppsala, Sweden www.who-umc.org VIG I ***

2013-05-26/30 ESWC2013 10th Extended Semantic Web Conference Montpellier, France http://2013.eswc-conferences.org/ IT I **

2013-06-3/4 EUHealthData2013

2013 European Summit on the Trustworthy Reuse of Health Data By invitation only: http://bit.ly/2013_EU_SummitonTrustworthyReuseofHealthData

Brussels, BE http://euhealthdata2013.imia.info). eH E *

2013-08-17/18 Context Sensitive Health Informatics Pre-Medinfo2013

Copenhagen, Denmark

www.cshi2013.org, http://wp.me/pvCUS-1ql

eH I *

2013-08-20/23 Medinfo 2013 Medinfo Copenhagen,

Denmark www.medinfo2013.dk eH I **

2013-08-25/28 ICPE 2013 International Conference on Pharmaco-epidemilogy & Therapeutic Risk Management Montreal, Canada http://www.pharmacoepi.org VIG I ***

2013-08-31/ 09-05 FIP 2013 World Congress of Pharmacy and Pharmaceutical

Sciences Dublin, Ireland www.fip.org PH I *

2013-09-1 AAL Forum 2013 Ambient Assisted Living Forum 2013 Norrköping,

Sweden www.aalforum.eu eH I **

2013-10-1/4 ISOP2013 International Society of Pharmacovigilance Annual Meeting Pisa, Italy www.isoponline.org VIG I **

2013-11-20/23 Medica 2013 Medica Düsseldorf, Germany www.medica.de IT I *

2013-11- HIMMS CIO HIMMS Europe CIO Summit www.hitleadershipsummit.eu IT I *

2014-04 Med@Tel Med@Tel by ISfTeH Luxembourg http://www.medetel.eu eH I ** 2014-04 conHIT Conference of German IT vendors association Berlin, Germany www.cohit.de/en IT N *

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2014-05- WoHIT2014 World of Health IT Athens, Greece www.worldofhealthit.org eH I **

2014-05-22/24 UMC UMC Research Conference 2014 RISK: What risk? Whose risk? Uppsala, Sweden www.who-umc.org/research VIG I ***

2014-05- ESWC2014 11th Extended Semantic Web Conference http://www.eswc-conferences.org/events IT I **

2014-08- ICPE 2014 International Conference on Pharmaco-epidemilogy & Therapeutic Risk Management http://www.pharmacoepi.org VIG I ***

2014-08- MIE 2014 Medical Informatics Europe Istanbul, Turkey www.efmi.org eH I **

2014-10- ISOP2014 International Society of Pharmacovigilance Annual Meeting www.isoponline.org VIG I **

2014-04 Med@Tel Med@Tel by ISfTeH Luxembourg http://www.medetel.eu eH I ** 2015-04 conHIT Conference of German IT vendors association Berlin, Germany www.cohit.de/en IT N * 2015-05- WoHIT2015 World of Health IT www.worldofhealthit.org eH I ** 2015-08 Medinfo2015 Medinfo Sao Paolo, Brazil www.imia-medinfo.org eH I *

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ANNEX 6 SALUS INFOSHEET

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SALUS InfoSheet for the patient and healthcare organisations

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Institution(where(to(send(SALUS(Info(Sheet( Person( e4mail(

Belgian(institutes(where(to(send(SALUS(Info(Sheet( ! !E!health!Belgium! Jacques!de!Toeuf! [email protected]!

E!health!Belgium! Benny!Van!Bruaene! [email protected]!

FOD!gezondheidszorg!B!Cel!Informatica,!Telematica!en!Communicatie!in!de!Gezondheidszorg!

Luc!Nicolas! [email protected]!

Kabinet!Gezondheidszorg!van!de!Vlaamse!regering! Karine!Moykens! [email protected]!

National!contact!point!H2020!(health!+!ICT)! Sarah!Van!Haelst! [email protected]!

National!contact!point!H2020!(health!+!ICT)! Pascale!Van!Dinter!! [email protected]!

National!contact!point!H2020!(health!+!ICT)! Alain!Deleener!! [email protected]!

Federaal!Kenniscentrum!voor!de!gezondheidszorg!B!KCE! ! [email protected]!

Federaal!Kenniscentrum!voor!de!gezondheidszorg!B!KCE! Gudrun!Briat! [email protected]!

Federaal!Kenniscentrum!voor!de!gezondheidszorg!B!KCE! programma!mangement! [email protected]!

Federaal!Agentschap!voor!geneesmiddelen!en!gezondheidsproducten!!

! [email protected]!

Federaal!Agentschap!voor!geneesmiddelen!en!gezondheidsproducten!!

Ann!Eeckhout! [email protected]!

Federaal!Agentschap!voor!geneesmiddelen!en!gezondheidsproducten!B!geneesmiddelenbewaking!


Federaal!Agentschap!voor!geneesmiddelen!en!gezondheidsproducten!B!geneesmiddelenbewaking!


LUSS!! Bernadette!Pirsoul! LUSS!–!Ligue!des!Usagers!de!Santé!asbl!Avenue!Sergent!Vrithoff,!123!5000!Namur!www.luss.be!

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!!Vlaams!Patiëntenforum! !Roel!Heijlen! Groenveldstraat!15!3001!Heverlee!www.vlaamspatientenforum.be!Contact!person!!!!!!!!!!!!!!!!!Roel!Heijlen!A!members!association.!Dutch!speaking!

! ! !Dutch(Institutes( ! !KNMP!(pharmacists)! ! [email protected]!

LAREB!Agency!Netherlands!Pharmacological!Centre! Dr!F.W.!Dijkers!!(board!member)!Dr.!A.C.!Kant!(director)!

[email protected]!

NHG!(DUtch!Scienbtific!Institute!for!GP’s)! ! [email protected]!

LHV!(GP!Union)! ! Postbus!20056!3502!LB!Utrecht!Bezoekadres:!'Domus!Medica'!Mercatorlaan!1200!B!3528!BL!Utrecht!

KNMG!(Royal!Association!of!Medical!Docrors)! Prof.!dr.!R.J!van!der!Gaag,!chairman! [email protected]!

(French(institutes(where(to(send(SALUS(Info(Sheet(

( !

HEGP!Pharmacovigilance!center! Agnès!LilloBLe!Louët! [email protected]!

SaintBEtienne!Pharmacovigilance!center! MarieBNoelle!Beyens! [email protected]!

COMEDIMS!/!APHP! Philippe!Lechat! [email protected]!

ANSM!(French!Agency!for!Drug!safety)! Evelyne!Felip! [email protected]!

CSS!Patient! Eric!Lepage! [email protected]!

CME! Loic!Capron! [email protected]!

EURORDIS! Yann!Le!Cam! [email protected]!

GRAM!(INSERM!group!linked!to!associations!of!patients)! Martine!Bungener! [email protected]!

AMUF!(French!assocaition!of!emergengy!HPs)! ! [email protected]!

INSERM!relations!internationales! Claire!Giry! [email protected]!

! ! !Swiss(institutes( ! !

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Schweizerisches!Heilmittelinstitut!Swissmedic,!Swiss!agency!for!the!authorisation!and!market!supervision!of!all!therapeutic!products!

Jürg!Schnetzer,!director! Tel.!+41!31!322!02!11!Fax!+41!31!322!02!12!anfragen@swissmedic.ch!https://www.swissmedic.ch/ueber/01416/index.html?lang=de!

Swiss!Association!for!Simulation!in!Healthcare,!SASH! Carine!LayatBBurn,!PRBManager! [email protected]!http://www.medicalsimulation.ch/contactBus.php!

Krebsliga!Schweiz! ! Tel.:!031!389!91!00!!Fax:!031!389!91!60!EBMail:[email protected]!http://www.krebsliga.ch/de/!

Swiss!School!of!Public!Healthplus!! Prof.!Dr.!Charlotte!Braun!B!Fahrländer,!director!

[email protected]!http://www.ssphplus.info/cgiBbin/baseportal.pl?htx=/ssphplus.info/startseite_en!

EMH!Schweizerische!Arztezeitung! Elisa!Juan!(Redaktionssekretariat)!Dr!Karin!Wurz!

[email protected][email protected]!www.saez.ch!www.emh.ch!

! ! !Turkish(Institutes(where(to(send(SALUS(Info(Sheet( ! !Ministry!of!Health!B!Turkish!Drug!and!Medical!Device!Institute! Dr.!Saim!KERMAN! [email protected]!Ministry!of!Health!B!Health!Information!Systems!Directorate! Dr.!!Unal!Hulur! [email protected]!Minstry!of!Health!B!Turkish!Public!Health!Institute!! Prof.!Dr.!Seçil!ÖZKAN! [email protected],[email protected]!! ! !European(Institutes(and(varia( ! !European!Brain!Council! Dr!Mary!G!Baker,!MBE!

President!email:[email protected]!!!email:[email protected]!!Tel:!+44!(0)1483!740604!www.europeanbraincouncil.org!

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Arthritis!Research!UK! Dr!Alan!Silman! His!PA!is!Liz!Holloway!Executive!PA!to!Director!of!Research!Strategy!and!Policy!Arthritis!Research!UK!Copeman!House,!St!Mary's!Court,!St!Mary's!Gate,!Chesterfield!S41!7TD!t:01246!541122!m:!07918!761!769!e:[email protected]!w:!http://www.arthritisresearchuk.org!

European!Patien!Forum! Nicola!Bedlingon! Nicola!Bedlingon!European!Patien!Forum!Executive!Director!www.euBpatient.eu!

EPPOSI! ! Tel.!+32!2!503!13!07!Fax!+32!2!274!17!59!email:[email protected]!B!See!more!at:!http://www.epposi.org/index.php/contactBus#sthash.dx0C3k13.dpuf!

CPME! ! !DIMDI! Sven!Borowski!(Public!Relations)! DIMDI!

German!Institut!for!Medical!Documentation!and!Information!Waisenhausgasse!36B38a!50676!Cologne,!Germany!

BfArM! Stefanie!Lorenz!(Public!Relations)[email protected]!

BfArM!Federal!Institute!for!Drugs!and!Medical!Devices!KurtBGeorgBKiesingerBAllee!3!53175!Bonn,!Germany!

European!Federation!of!Pharmaceutical!Industries!and!Associa! Brian!Ager! [email protected]!European!Cancer!Patient!Coalition! info! [email protected]!European!Patients!Forum! Info! [email protected]!Swedish!Thalidomide!Society! info! [email protected]!

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International!Alliance!of!Patients'!Organizations! Lizette!Jensen! [email protected]!Institute!for!Safe!Medication!Practices! Michael!Cohen! [email protected]!Bulletin!d'Information!du!Medicament!et!de!Pharmacovigilance! Michel!leDuff! [email protected]!IDA!Foundation! Michiel!de!Goeje! [email protected]!Dialogo!sui!Farmaci! Nicola!Magrini! [email protected]!European!Federation!of!Pharmaceutical!Industries!and!Associa! Richard!Bergström! [email protected]!Georgian!Society!of!Clinical!Pharmacy! Rusudan!Jashi! [email protected]!Association!Internationale!de!la!Mutualité! Secretary!General! [email protected]!Health!Action!Forum! Srkhasru! [email protected]!Interrepublican!confederation!of!Consumers! Svetlana!Zavidova! [email protected]!Health!Action!Forum! Zahed!Md!Masud! [email protected]!

A list of patient and healthcare organizations to whom the Infosheet has been sent.

salus d2 2 2 - dissemination v1.0 final · salus-fp7-287800• d2.2.2 • version 1.0 • january...

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