ehealth Governance Initiative: Joint Action JA-EHGov & Thematic Network SEHGovIA DELIVERABLE Version: 2.4 Date:
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1 ehealth Governance Initiative: Joint Action JA-EHGov & Thematic Network SEHGovIA DELIVERABLE JA D4.1.1 Strategy & Policy Alignment Documents I WP4 (JA) - Policy Development and Strategy Alignment Version: 2.4 Date: Project co-funded by the European Commission within the ICT Policy Support Programme and the Health Framework Programme
2 COVER PAGE Project Acronym Grant Agreement number Status* Dissemination level** Author(s) & Organization(s) Contact ehgi Final PU SENA: Anna Adelöf MSPS: Arturo Romero, Ana Delgado, Icíar Abad Arturo Romero * Status: Draft / In Progress / Final ** Dissemination level: PU = Public or CO = Confidential, only for members of the consortium and the Commission Services ABSTRACT Deliverable points out strategic information for decision making. This is the result of an analysis of the information regarding ehealth Member States policies which has been gathered by the WP4 through a questionnaire based methodology. Results obtained by these questionnaires should have facilitated the process of elaborating recommendations to the high-level group. It also highlights some aspects of the feedback received at this stage from the WP on Semantic Interoperability (ehgi WP8 - Interoperability, Standardization & Market). Page 1 of 49
3 Change History Version Date Status Author Details Review Draft SENA: Anna Adelöf MSPS: Arturo Romero, Ana Delgado, Icíar Abad In progress SENA: Anna Adelöf MSPS: Arturo Romero, Ana Delgado, Icíar Abad Final SENA: Anna Adelöf MSPS: Arturo Romero, Ana Delgado, Icíar Abad Structure and proposed index Content to be discussed Revised Internal WP leaders Final Isabella Weber layout, grammar Michael Wilks WP4 WP Final Michael Wilks grammar Isabella Weber Final Isabella Weber layout PSC Final Arturo Romero Track Change List PSC Statement of originality: This deliverable contains original unpublished work except where clearly indicated otherwise. Acknowledgement of previously published material and of the work of others has been made through appropriate citation, quotation or both. Page 2 of 49
4 ABBREVIATIONS ehgi EU EHR WP EXCO PSC WPL MS/MSs MoH LSP SCT EN HL7 JA WS EC ehealth Governance Initiative European Union Electronic Health Records Work Package Executive Committee Project Steering Committee Work Package Leader Member State/s Ministry of Health Large Scale Pilots Snomed CT Health informatics - Electronic Health Record Communications European Standard. Health Level Seven Joint Action Workshop European Commission LIST OF REFERENCES Name of Author Calliope Thematic Network Calliope Thematic Network with the European Commission Radboud University Nijmegen Medical Centre, Department of Medical Informatics; Author: Dipak Kalra. European Commission Reference / Source EU ehealth Interoperability Roadmap (December 2010) Semantic Interoperability Deployment and Research Roadmap (SemanticHEALTH). Commission Recommendation of 2 July 2008 on cross-border interoperability of electronic health record systems (Doc. Number C(2008) 3282) Page 3 of 49
5 TABLE OF CONTENTS 1. WP4 working plan WP4 Structure WP4 goals WP4 methodology Scope of deliverable Policies and strategies: initial questionnaire Structure Analysis Results & benchmark Conclusions Main issues Recommendations Do Don t ANNEX: Minutes from the Telephone Conference on the 30 th May SIOp Questionnaire (Semantic interoperability) from OECD Presentation to the ehgi WP4 Web conference_ ehgi WP4 Monitor Questionnaire on semantic aspects Presentation of result of the ehgi SIOp Survey Analysis in Gent s Workshop... 5 Page 4 of 49
6 1. WP4 working plan 1.1 WP4 Structure Leading Beneficiary: Ministry of Health and Social Policy, Spain Work Package Leader: Arturo Romero Co-leading Beneficiary: Ministry of Health and Social Affairs, Sweden Work Package Co-Leader: Anna Adelöf Participants: Name Organization address Adelöf, Anna Ministry of Health and Social Affairs, Sweden (SENA) Birkenshaw, Matthew Department of Health, UK Romero, Arturo Ministry of Health and Social Policy, Spain (MSPS) Gómez, Silvia / Paul De European Federation of Nurses efn@efn.be Raeve Associations (EFN) Meglič, Matic National Institute of Public Health, matic.meglic@izzivi.si Slovenia (MHS) Whitehouse, Diane European Health Telematics Association (EHTEL) diane.whitehouse@ehtel.eu 1.2 WP4 goals WP4 Overall goals for the period : To support the ehgi Coordinator and all the project by carrying out a continuous analysis and synthesis of relevant National and European health strategies and ehealth policies as well as legal documents at EU level. Give the Executive Committee (EXCO) members a summarized view of the real ehealth strategies in the European Union (EU) and Member States (MSs). Draft conclusion on ehealth Roadmap (referring to prioritisation) in biannual reports. Close analysis of Digital Agenda and other related activities by the European Commission (EC). WP4 Specific goals in this phase: Benchmarking: Analysing and summarising information provided by stakeholders in a previous phase of the WP4 work in the ehgi project (country analysis with EXCO by a questionnaire). The focus aims to find out strategies using this information in order to study strengths and weaknesses of MSs regarding ehealth. Page 5 of 49
7 Note: Since numerous countries did not answer the questionnaire on ehealth this objective needs to be developed further. This has caused a delay in this deliverable. Semantic aspects: performed through a new questionnaire based on semantic issues. Generating a shared and agreed product by analysing MSs different approaches and experiences. This aims to avoid a lack of defined strategies on semantics and ehealth policies. Identify realistic opportunities for convergence among participating countries. Find out the main priorities and top issues to be addressed from now on. Lead on arranging the workshop (WS) on eid for ehealth in February 2013 in Brussels. 1.3 WP4 methodology The aforementioned specific goals were planned as follows: 1. A second phase within this group was started up in April The Swedish and the Spanish Ministry of Health (MoH), acting as leaders of this group attended a Web conference on 30th May 2012 in order to establish the scope, priorities and methodology to process this phase (See Annex 5.1). 2. Considering work done previously within other large scale pilots (LSPs), joint action (JA) groups and the WP4 work done so far, specific deficiencies have been identified and, consequently, other specific questions have been taken into account in order to develop a more accurate questionnaire, especially regarding semantic issues and ehealth policies. An analysis of which MSs had not yet provided answer was carried out in order to encourage them to provide inputs needed to establish a full MS record of which strategies are being implemented and what needs are being identified within EU members. The analysis of potential deficiencies provided information on which subjects were remained unknown: Legal harmonization Professionals performance regarding their activity and their capacity to involve other health related professionals. eid common space Standards adoption Semantic interoperability SNOMED CT and ICD family content discussions Common Terminology Services Page 6 of 49
8 3. Despite the subjects identified as remaining matters to be addressed, semantic interoperability was considered as a focus topic to be addressed at this phase within the WP4, so a special collaboration channel was established with the semantic group as a next step. 4. Within this collaboration, the following main working priorities have been identified: a. Obtain inputs from other colleagues regarding their experiences on terminology matters. b. Definition of a strategy on semantic matters. c. Reinforcing activity on eid management following eid Workshop. d. The setting out of a new group dynamic within the WP4. e. Definition of a questionnaire to be sent to MSs. f. Production of a separate output regarding terminology. g. Introduction of the EN standard. h. Exploitation system on data indicators (secondary uses on electronic health records (EHR) experience). Working Methodology: Tools have been defined and adopted in order to be developed within the WP4. These tools are: a. Telephone meetings between both co-leaders of the WP4 group. b. Telephone/Web conferences with the whole group. (See Annex 5.1, 5.3) c. OECD-type questionnaire model: Closed response model with open text (See Annex 5.2) d. A Monitor model to be explained to the rest of the participants (See Annex 5.4) This one will act for this deliverable as a tool to ensure that all work carried out within the project and WP4 group responds to identified needs of patients and health professionals and is closely linked to the National and European healthcare policy framework. e. ing f. Face to Face meetings: WP4 meeting November 2011 in Brussels, WS held September 2012 in Ghent. Page 7 of 49
9 Identified Tasks: Tasks Participants Material Identification of remaining matters regarding information already existing from previous WP4 analysis. Arturo Romero + Anna Adelöf 1. Meeting 30 th May Questionnaire draft on semantic interoperability (SIOp) from OECD. Pinpoint lack of information on ehealth policies and implementations undertaken by MSs regarding these remaining matters Gather new MS s information and check with the previous known information Data processing methodology (Monitor) Outcomes analysis & elaboration of recommendations based on the collected information and outcomes Elaboration of the Deliverable Arrange eid workshop of February 2013 Arturo Romero with Anna Adelöf + WP4 group WP4 Group + Gent workshop Arturo Romeros s Spanish team Arturo Romeros s Spanish team WP4 Group + Anna Adelöf and Arturo Romero s Spanish team. WP4 Group, Arturo Romero + Spanish team + Anna Adelöf, ehgi coordination 3. Presentation Web Conference for ehgi_wp4_group_ SIOp (Semantic interoperability) Questionnaire. 5. ehgi WP4 Monitor 6. WP4 questionnaire national ehealth strategies (MSs) + ehgi Questionnaire on Semantic interoperability aspects. 7. Questionnaire_Sema ntic_aspects_2012_ 08.xls Excel File to process MS s data 8. Questionnaire_Sema ntic_aspects_2012_ 08.xls Excel File to process MS s data. 9. Gent s Work Shop: Presentation_Sema ntic_aspects_ghent _2012_09_04_v4 10. Questionnaire_Sema ntic_aspects_2012_ 08.xls Excel File. 11. Deliverable Deliverable Page 8 of 49
10 1.4 Scope of deliverable This paper aims to provide a set of conclusions drawn from the analysis of the collected data, and give more specific knowledge from the main issues observed from the first phase addressed by the WP4 up to November The final objective is to describe some recommendations and to provide the EXCO with do s and don ts relating to the main issues. As mentioned before, both questionnaires on ehealth strategies and semantic interoperability were the initial scope of this deliverable. Since the ehealth questionnaire has not delivered a sufficient feedback, the deliverable will focus only on semantic interoperability topics. Given the importance of adequate information also in relation to ehealth strategies at EU level, the matter will be submitted to the attention of ehealth network (eventually in the next ehn meeting in Dublin in May 2013). Consequently, this paper has the following main objectives. To reflect the discussion within Gent s WS participants regarding survey results (See Annex 5.5, 5.6). Get a clearer view of the situation regarding semantic interoperability in MSs and beneficiaries. Identify open issues for MSs. Deliver input for a roadmap on priorities and recommendations regarding semantic aspects. 2. Policies and strategies: initial questionnaire 2.1 Structure Despite the previous data collection phase, a second one was planned and executed. A preliminary questionnaire draft was sent to the WP4 members and then submitted to MSs as a basis to discuss results at the Gent WS in September Results obtained from this data collection were reflected in a presentation which aimed to identify the needs, strategies and initiatives on ehealth within MSs and EU. A set of preliminary conclusions was drawn from the analysis of the collected data, and two key questions were identified when addressing the analysis: What are the MSs and EU doing? What should be done? (Priorities & Recommendations). This has been the basis for the content of this deliverable. Page 9 of 49
11 Criteria adopted for elaborating the current survey s questions were extracted from previous works done at an international level. The OECD s survey on semantic interoperability and ehealth policies was taken into account. The questionnaire does include many questions about classifications and terminologies, although it does not cover the structure of information in clinical documents. This aspect should be addressed more in detail in future consultations to be developed with MSs. 2.2 Analysis For comments in regard with the document Questionnaire_Semantic_Aspects_2012_08.xls, see Annex 5.5. Data analysis methodology was processed in two steps: A) Elaborating a questionnaire: a first draft and development was made in order to be agreed with the co-leader. After this, the content of this questionnaire as well as the internal workflow was established: Sweden as co-leader would send and gather questionnaires from other MSs and Spain would analyze them and extract results. Areas identified to be addressed by the questionnaire were: 1.- National strategy on semantic interoperability 2.- Electronic Health Records 3.- Coding systems 4.- General questions (related to the utility of the questionnaire itself) B) Further analysing of the questionnaire as follows: Within this phase 4 subtasks were identified: 1. Finding data available Existing data as well as new data collected. In addition, an overview map with MSs providing information was elaborated. (See Annex 5.6) 2. Data load All data obtained from the questionnaires were recorded into an Excel document in order to be processed. 3. Processing: 3 tasks were actioned as follows Encoding questions, respondents and answers by the following categories: Questions: divided into sections, items, options (direct / conditional) and comments (required comments or spontaneous ones) Respondents: Identification of countries. Page 10 of 49
12 Answers, divided in: Scales and categories Short responses (yes or no) Free text response and free comments 3.2. Tagging of text input 3.3. Modeling: By standardising responses gathered in order to obtain results on the matter: System codes used by MSs 4. Tabulation: Results obtained for this area were pooled in a dashboard in order to obtain a matrix on results regarding the coding system MSs. This dashboard allowed the analyst to exploit information gathered and formulate the main issues raised among MSs. 2.3 Results & benchmark As a first consideration we outline the following: The questionnaire was submitted to MSs in August A timeframe was established in order to receive feedback from MSs: one month was considered as sufficient in principle. The questionnaire period was closed on 31st August The proposed structure and content had a good acceptance since 19 countries submitted it completed. Only 7 countries did not deliver answers (Norway, Netherlands, Czech Republic, France, Portugal, Greece and Turkey). During first round, countries responding were: o Slovakia o Spain o Germany o United Kingdom o Switzerland o Denmark o Italy o Estonia o Ireland o Belgium o Sweden o Latvia o Cyprus o Slovenia o Luxemburg o Malta o Austria o Poland Page 11 of 49
13 o Hungary There are 7 countries which did not provide any feedback on the first round. Therefore, preliminary results from the questionnaire are not the product of a full coverage. It would have been appropriate to better fit the operational purpose of this document to elaborate and jointly analyze also completed surveys transmitted after supplementary deadlines. Increase of coverage would have been significant (around 20% relative increase) but overall representativeness would not have been reached and multiple results analysis could result in confusing reports to ehn. Responses from 4 countries were obtained out of time. These countries were: o Portugal o Norway o Greece o Netherlands No response was obtained from three countries; given the importance of a complete and representative feedback to semantic interoperability questionnaire, the matter will be submitted to the attention of the ehealth Network (eventually in the next ehn meeting in Dublin in May 2013). Non respondents were: o France o Czech Republic o Turkey. A relatively low rate of no answer has been noted. However the rates of unavailable answers have been higher. This was observed especially when asking about the existence of a National Strategy on Semantic Interoperability, where 7 countries did not identify any information available, and 9 did not have an idea of the timeframe in which this National strategy could be adopted. Results regarding the aforementioned 4 areas were identified as follows: 1. National strategy on semantic interoperability From the 19 completed surveys, we found out that 7 countries have established a National Strategy on Semantic Interoperability. 2 countries have not established such a national strategy; 10 countries have no strategy yet although they are working on it. 2. Electronic Health Records 14 of 19 countries have implemented a national plan or policy to establish an EHR system. However 5 have not adopted any policy yet. Page 12 of 49
14 10 countries of the 19 require health care providers to adopt EHR systems which implement interoperability standards. Main standards adopted are HL7 and IHE. Just one country enters information in EHR in an exclusively structured way. The remaining countries use a combination of structured and unstructured entries. Only 1 country has not provided an answer to this question. 3.-Coding systems Answers regarding the existence of coding systems indicate that the 19 countries have developed or made available a coding system as follows: Likewise, 10 of these 19 countries recognized a demand for the development of new coding systems 10 countries have established the obligation to code medical information. 18 countries have developed coding rules 6 countries invest in a terminology server 11 countries pay the costs associated with the use of coding systems A majority of countries develop incentives (not necessarily financial) to improve the use of coding systems as well as international collaboration in order to validate them Page 13 of 49
15 4.-General questions A general perception received from countries is the need for the ehgi to establish a forum in which information and experience is shared concerning methodologies, subsets, common developments and solutions adopted. The ehgi should address the definition of a common European Framework concerning medical terminologies, classifications, medical thesauri as well as clinical information models to be taken as a reference in the implementation of Health information systems within the different institutional levels. The ehgi should argue for enhanced European agreed standards and also encourage collaboration between standardization organizations. 2.4 Conclusions There is a broad consensus regarding the importance of adopting a mixed system for record entry, both: structured and unstructured by free text. There is a clear distribution pattern among MSs, where 3 blocks can be differentiated: those leading developments of semantic interoperability, those following others, and those staying or waiting. Valuable experiences were found among those countries leading, and these could be shared; consequently efforts involve more advanced MSs for transfer of their knowledge should be stimulated by the ehgi in order to share successful real experiences and achievements. A wide range of challenges was observed from the survey; Especially noteworthy are: o Terminology standards harmonization o Use of common models for health information and processes o There is a lack of mentions regarding EN 13606, as well as information that could give us an idea for the reasons for this low acceptance o There is a non-convergence between classifications and terminologies o Semantics include containers, contents and binding o There is not enough information on commercial packages o Many terminology servers become a new closed technology o Decentralization is a relevant issue for standards adoption General questions provided valuable knowledge 3. Main issues A lack of trend in having a national strategy on semantic interoperability Page 14 of 49
16 Strong involvement of every MS is needed in order to obtain a successful semantic interoperability among countries. A low degree of implementation of the EN standards Non-convergence among versions of classifications and terminologies National and/or cross-border interoperability which is the first priority? Semantic Health Project deliverable 4.1 priority areas were rarely mentioned 4. Recommendations 4.1 Do Do study both the containers (model) and the binding to the terminologies Do discuss recommendations among MSs Do stimulate collaboration from more advanced countries Do keep raw data from surveys available in an interoperable format Do emphasise to all ehgi participants that it is time to act Do consider not why but how it is to be done Do explore networked and shared semantic resources 4.2 Don t Don t let time pass without developing EU guidelines on semantic interoperability Don t overlook results of R&D projects (e.g. Semantic HealthNet) Don t delegate coordination to the market Page 15 of 49
17 5. ANNEX: 5.1 Minutes from the Telephone Conference on the 30 th May WP 4 Policy and Strategy: meeting between the two leaders (Sweden Spain) before the July EXCO meeting in Vienna. Participants Anna Adelöf Arturo Romero Icíar Abad Ana Delgado. Addressed matters: 1. Priorities of the WP4 2. Working System Proposal within the WP4 3. Action Points to be taken from now on 1.- Priorities of WP4 The idea is to make a short deliverable on country questionnaires. Anna Adelöf has identified two main priorities: a) Based on Benchmarking Analysing and summarizing main information that stakeholders provided in a previous phase of the WP4 work in the ehgi project (Country analysis with EXCO by a questionnaire). The focus aims to find out strategies within this information in order to study strengths and weaknesses of Members states regarding ehealth. Some countries did not answer that questionnaire and that can be foster. b) Semantic Search: Trough a new questionnaire based on semantic issues even if it was not the initial scope of the group. Generating an shared and agreed product by analysing Member states different experiences. This aims to avoid the lack of defined strategy c) Redefinition of the eid management What is needed as priority: o o o o o o o o Inputs from other colleagues regarding experiences on terminology matters. Definition of an strategy on semantic matters. Redefinition of the eid Management. The Setting out of a team dynamic within the WP4. Definition of a questionnaire to be sent to MSs. Production of a separate product regarding Terminology. Introduction of the model. Exploitation system on data indicators (secondary uses on HER experience) Page 16 of 49
18 Arturo Romero presents a Monitor summarizing the semantic questionnaire strategy and the possible fields of the questionnaire. 2.- Working system a) A Monitor model to be explained to the other participants. b) Questionnaire model: Closed response model with open text also (users more comfortable with open one) Delimitation of this questionnaire in the next weeks. c) Telephone conferences with the whole group and also by reduced working groups. d) Action points to be taken from now on Creation of a summary about solutions adopted on terminology matters by the different MSs based on their various interests. Analyse Synergie areas among the different MSs. Ana Adelöf: Analyse the previous questionnaire submitted in a previous phase of the ehgi with the aim of studying data provided by MSs as well as to see potential new issues and questions to be brought to light. Spanish team: define a questionnaire model and give a list of issues regarding 3 areas within the ehgi: ehealth, eid and Semantic. This system will be shared with the rest of the group by . Upload Monitor in PP (Project Place) Bring up to discussion the eid management in the next EXCO meeting (Vienna July) Page 17 of 49
19 5.2 SIOp Questionnaire (Semantic interoperability) from OECD Questionnaire WP 4 ehealth strategies Country: Data entry: Date: SECURE ACCESS TO SYSTEMS To access healthcare systems securely, what procedures do you have in place to do so: As professionals: For individuals to access their records: Is this arranged at Local/Regional/National/Private sector level? Is this documented in a strategy/policy at National or Regional level? Besides the health care provider, do you allow other public services to have secure access to health information? (For example, social services.) Are you using any standard(s) for this? Page 1 of 49
20 Is your country engaged in any European projects on this? (List the projects by providing the web link) ELECTRONIC HEALTH RECORDS Do you have deployment of EHRs in all your hospitals? If No, give an estimation of Hospital coverage with EHR. Do you have deployment of EHRs in all your primary care settings? If No, give an estimation of Primary Care Facility coverage with EHR. Are the systems interoperable with regard to the exchange of information? Is deployment backed by a national strategy? Please name the strategy and if possible provide a web link Have you got a central infrastructure to support deployment? Is digital imaging integrated within your EHR systems? Are you using any standard(s) for this? Is your country engaged in any European projects on this? (List the projects by providing the web link) Page 2 of 49
21 PATIENT SUMMARY Do you have a national electronic patient summary implemented? (National not sectoral, i.e. organizationally independent.) Is deployment of the national patient summary backed by a national strategy? Please name the strategy and if possible provide a web link Can a patient access his or her patient summary online? If so, how? What is the timeline of the implementation of the electronic patient summary? Are you using one or several national standard(s) for this? If Yes, which standards? eprescribing Do you have eprescribing deployed in all your pharmacies? If no, are there plans to do so and by when? Do you have eprescribing deployed in all your primary care settings? Page 3 of 49
22 Can a patient access his or her eprescription online? What is the timeline of the implementation for eprescribing? Is your country engaged in any European projects on this? (List the projects by providing the web link) TELE-RELATED SERVICES IN HEALTHCARE Are your tele-related services deployed on a national level in healthcare? If yes, please list all the names of the services, (e.g. teleradiology) according to the following categories: - Health education and prevention activities - Hospital and healthcare appointments - Medical/Nursing treatments, care and consultations - Follow-up, tele-monitoring and rehabilitation at home - Others: please specify: If your tele-related services are not deployed nationally, please state how they are delivered and list the types of services available: Are you tele-related services backed by a local or national strategy? What is the timeline of the implementation for tele-related services in healthcare? Is your country engaged in any European projects on this? (List the projects by providing the web link) Page 4 of 49
23 PATIENT ACCESS Can a patient access his or her whole health history (experienced through both hospitals and with the general practitioner/ primary care settings) online? If yes, Is this access delivered locally or nationally? Please explain what system you use for gaining access i.e. is it a portal? If yes, does the access contain access to more than one type of record to give a complete health record history?. If no, do you have plans to do so?. Do patients have to pay for this service? What is the timeline of the implementation for patients' access to their whole health history? Is your country engaged in any European projects on this? (List the projects by providing the web link) PUBLIC HEALTH AND RESEARCH Do you publish online public health-related data? If yes, do you have a national centre that provides this? Page 5 of 49
24 Is the commitment to publish online public health-related data backed by a national strategy? If yes, can citizens access the data? In what format? Is your country engaged in any European projects on this? (List the projects by providing the web link) NATIONAL STANDARDS Do you have a national strategy/policy regarding usage and implementation of standards? (i.e., that is similar to the European policy on standardisation) What is the process of deciding on standards adoption in your country? What is the average timeline of implementation of national standards? Is your country engaged in any European projects on this? (List the projects by providing the web link) FUNDING OF EHEALTH DEPLOYMENT How is ehealth deployment in your country funded? Public or private? Or a mix of both? Do you use endorsements, financial support, to increase implementation speed? Yes If yes, what is the strategy and the planned outcome? Have you received funding from the EU over the last 10 years for deployment of ehealth in your country? Page 6 of 49
25 If yes, please list the sources of funding Stakeholder Engagement Which stakeholders are engaged in strategy development? How do you collaborate with them? Are you engaged in any European co-financed projects on this topic? (List the projects by providing the web link) Thank you! Page 7 of 49
26 5.3 Presentation to the ehgi WP4 Web conference_ Page 1 of 49
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28 5.4 ehgi WP4 Monitor Page 3 of 49
29 5.5 Questionnaire on semantic aspects Page 4 of 49
30 5.6 Presentation of result of the ehgi SIOp Survey Analysis in Gent s Workshop Page 5 of 49
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