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Introduction  Title:
SCOPE AND LIMITATIONS OF THE RESEARCH
 Perspective of the study

 

Scope and limitations of the research

In this first exploratory phase on the issue of profiling in health related issues, we concentrate mainly on the collection, storage and use (exploitation) of health data as related to the issue of electronic health records and electronic health cards. Electronic health records and electronic health cards are our core study object. These (different but complementary) tools are currently getting major attention in relation to the development of eHealth (Wilson and Lessens, 2006, 17; Hämäläinen et al., 2007).  We look at these tools from a socio-legal perspective.

Our research is comparative. We selected a sample from Northern, Southern, Western and Eastern countries in Europe, in order to get a cross-sectional view of developments in Europe. Switzerland and Norway are included as they are members of the EU i2010 subgroup on health. However, the selection of countries is limited. This is due to the fact that we only have a limited number of partners with limited resources to gather information. As a result this study is explorative in nature. The scope of countries is too limited to provide an exhaustive representation of EU states. Further in-depth research is clearly needed. Moreover, our partners all have different backgrounds (such as privacy regulators, IT-universities, law faculties,…). Consequently, the answers to the question list are not homogenous. This makes it difficult and sometimes perilous to put the information in a comparative perspective.  

Table 1 gives an overview of the country/-ies and the FIDIS partners responsible for the information provision.  Especial thanks goes to the external contributors.

 

Countries 

Responsible FIDIS Partners 

External Contributors 

Remark 

Belgium  

Soenens E., VUB   (BE)

 

 

Italy  

Soenens, E., VUB (BE) 

 

 

UK  

Dyer, B., LsE (UK) 

Prof. R. Jones, Chairman of eHealth of the e-Health Association 

 

Germany (records)  

Raguse, M., ICPP (DE) 

 

 

Germany (cards) 

Husseiki, R., Sirrix (DE) 

 

 

Spain  

Daskala, B., IPTS (ES)

Inés Hernando Martin, Coordinator of the Office of Health Affairs, Department of public Services 

 

Switzerland  

Jaquet - Chiffelle, D. – O., VIP (CH) 

 

 

Norway  

Fischer - Huebner, S., Hedbom, H., Karlstadt (SE)

Kirsi Helkala from the University College Gjövik 

 

Sweden 

Fischer - Huebner, S. and Hedbom, H., Karlstadt (SE) 

Rose-Marie Åhlfeld from Skövde University 

 

Netherlands  

Nouwt, S., TILT (NL) 

 

 

Bulgaria 

Nouwt, S., TILT (NL) 

 

Bulgarian Ministry of healthcare did not react upon the invitation of S. Nouwt to fill in the questionnaire. 

Poland 

Raguse, M., ICPP (DE) 

 

Almost no information available in English  

 

We now discuss the gathering of information. 

 

Data collection: 

The deliverable is based on the information provided by FIDIS-correspondents. Data were collected by means of a common questionnaire (addressing the topics of privacy, profiling, patient identification of electronic health records and cards). The questionnaire was developed as a frame of reference to gather as much relevant information as possible. The period for fillling out the questionnaire was set between March 2007 and end of April 2007.

As we will see further, access to information for answering these questions was difficult to obtain within the practical constraints of this workpackage. If any, incompleteness and generality of the answers provided by the partners can to a large degree be explained by the complexity of the field: there is a lack of easy accessible information on a certain topic; it could be because the partners did not find good sources of information. Some national and sub-national organizations and institutions made more efforts than others to provide good access to interesting and relevant information regarding hot issues in the debates and developments.  

The partners mostly relied on various national documents on eHealth (e.g. national reports, policy plans, and official communications) and/or information which were provided by third parties. The language barrier was an obvious problem to obtain detailed information for particular countries. Although the co-editors took into account language skills of the partners, sometimes the information available was almost exclusively in the native language of the country. Especially in the case of Poland and Bulgaria, retrieving information relating eHealth seemed to be problematic. Unfortunately information about these countries is lacking.

Moreover, in states where health care and eHealth developments are mainly organized on the regional levels, obtaining detailed information regarding differences and similarities in the regions was too time-consuming for the correspondents.

At the moment, no information was communicated regarding the development and use of electronic health cards in Germany (except for some indirect information in the answers on electronic health records).

The state of the art presented in this document is thus necessarily biased and is not offering an exhaustive overview of all information on all topics. The description is based on relevant knowledge from the questionnaires, sometimes complemented with additional literature & documents.

Taking into account the particular limitations, some interesting observations on the issue of data collection, storage and use in health care are made, making it worth exploring the issue more in depth in the future. This specific topic could be interesting in relation to other FIDIS initiatives such as the database on Identity Management Systems and the literature collection on AmI, Profiling, Identity and Privacy (D7.10).  

 

 

Introduction  fidis-wp4-d4.11.eHealth_identity_management_in_several_types_of_welfare_states_in_Europe.sxw  Perspective of the study
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