The informed patient/citizen, health technology implementation, and stem cell research addressed at EHFG 2001

Brussels 17 July 2001This year, the 4th European Health Forum Gastein (EHFG) will take place from 26 to 29 September, 2001 in Bad Gastein/Salzburg under the theme "Integrating Health across Policies". Some 500 key decision makers and renowned experts from European institutions and all the relevant social sectors including patients and consumers, politicians, economists and industrialists, and scientists in more than 30 Western and Eastern European countries are expected to participate, with the aim of developing solution proposals on key issues of European health policy. Two special panel forums will be dedicated to "Health in the Information Age", addressing the issues of the informed patient/citizen, and health technology and policy implementation.

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The participants at EHFG 2001 will resume the discussion which was started at the EHFG 2000, deliberating on the possibilities of patient information and e-health, specifically on how informed patients and citizens can be integrated in health policy decisions and their implementation, or on how to influence these. Attendants will also closely look at the correlation between new information and communication technologies on the one hand and society, politics, health systems, and patients on the other.

The forum chair Ilona Kickbusch from Yale University and co-chair Stipe Oreskovic from the University of Zagreb will lead the sessions in which the informed patient/citizen is considered as a new partner in the political health arena. Different speakers will try to answer the following questions:

  1. What is the benefit to society and government to have health-literate citizens?
  2. What are the information needs of citizens? Results from research and academia.
    • The right to health and patients' rights: population-based assessment.
    • Information needs: Results from a Spanish study
  3. How to involve citizens in the decision making process? Experiences from NGO- and business & industry-partnerships in different countries.
    • The advocacy work of the Italian Tribunal
    • The European Experience with examples from the United Kingdom
    • The United States Experience
  4. How to involve citizens in Health Policy Development and Implementation? Current activities of the European Community.

The special forum on Health Technology and Policy Development will be led by chair Jürgen Dolle, Aktionsforum Telematik im Gesundheitswesen and reporter Rolf Engelbrecht from the European Federation of Medical Informatics. In this panel forum, there will be a key note presented by Ricky Richardson, from the UK Telemedicine Association and International eHealth Association on the topic of "Visions of eHealth revisited". Petra Wilson from the European Commission will talk about the legal aspects of e-health. Other topics relate to patients and health information on the Internet and the quality of this information. Case studies will show how e-health services are currently provided in Europe:

  • Case study 1: The virtual hospital by Jari Forsström, Atuline virtal hospital
  • Case study 2: On-line information system for rare diseases in Europe by Michael Schubert, Engelhorn Foundation for Rare Diseases

Another important matter is whether you can import stem cells and export ethics. While a subcommittee of the European Parliament, in which EHFG President Dr. Günther Leiner is the representative of the Austrian National Council, is dealing with the hopes and risks of biomedicine and new technologies in medicine, the United Kingdom, has already taken a decisive step. This EU member state allows the use of human embryos for stem cell research. Germany debates in public on whether to import embryonic stem cell lines for research purposes from Israel, because the national law on the protection of embryos would not allow this method. Today, Israel is already a leading centre of stem cell research worldwide.

Even if Austria or another European country decided to ban the production of stem cells using embryos, the free movement of goods as stipulated in the European Community legislation would make it impossible to prevent the import of embryonic stem cells since stem cells are nothing but medication and are considered goods. If a nation decided to impose an import ban to prohibit a mail-order trade with embryonic stem cells, the European Court of Justice would have the last word. Experts agree that even if it were possible to stop imports by introducing a specific law on pharmaceuticals, it would not be possible to control treatment tourism, for example to Great Britain, where treatment with embryonic stem cells is legal since January of this year.

All these issues in connection with the freedom of trade and services in the European Union and worldwide are also the cause of concern among the public. According to EHFG President Leiner, the demonstrations at WTO, the World Trade Organisation Conference in Seattle and at the World Economic Forum in Davos and Salzburg prove that these are burning issues for the people. As to citizen participation, however, Gastein has a decisive advantage over these events. Non-governmental Organisations (NGOs) and stakeholders have been participating at the Gastein conferences as equal partners from the very beginning. More information is available at the Web site of the European Health Forum Gastein.


Leslie Versweyveld

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