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Establishment of a European parent- and patient-oriented information and communication platform on Congenital Heart Defects

Final Report Summary - CHD PLATFORM (Establishment of a European parent- and patient-oriented information and communication platform on Congenital Heart Defects)

CHD PLATFORM aimed at establishing a European parent/patient oriented, web-based information and communication platform to cross-link the medical and the patient community. The major objective was a transfer of research findings into the patient community to such foster dialogue and debate on health research issues of interest to the target group. By the integration of the perspective of those affected in the sectors of health care and health care policy, the emergence of a mutual trust between the medical and the patient community should be achieved.

CHD PLATFORM turned out as a suitable medium to reach and integrate a wide audience including both parents/patients and medical professionals. It was successful in that it:
a. laid the foundation for a vertical transfer of knowledge from research into the congenital heart disease community and vice versa and
b. managed to provide a basis for a successful patient oriented communication. With respect to this the following activities were performed:

Horizontal and vertical networking was achieved by three European workshops (Bruges, Berlin, Barcelona). The major aim was reaching as many actors in the field of congenital heart disease as possible and to thus facilitate a fruitful exchange of ideas and information on developments in research and care. These activities lead to a continuously growing engagement of different patient/parent organisations and the foundation of new organisations. The intended integration of Eastern European participants was also achieved. The workshops were a great success in that they triggered many discussions on issues important to those affected and enabled to compare the situation of patients with congenital heart disease in different European regions.

Besides this, a high quality website, named Corience, was established to supply those concerned with comprehensive information, which was foreseen to be available in most important European languages in the long term to reach also non-English speakers. Its contents were elaborated and adjusted to the needs of those affected based on the ideas brought up during the workshops. Thanks to the cooperation with renowned scientists from various fields and the two-staged review process high quality and easy-to-understand articles on the website were achieved in an adequate timeframe. As an excellent quality, not least linguistically, of the contents was the major and indispensable task, a professional translation office was employed to ensure articles that are well composed in language and have a consistent tonality. Accordingly, with the focus being on the comprehensiveness and high quality of the website contents, the consortium decided to concentrate on an elaboration of these first at the expense of the number of translations originally aimed at. However, further language versions of the website were aimed for and additional funds for further translations could be raised at short notice from the Medtronic Foundation, allowing the translation into two more languages (Spanish, German).

In addition, both the newsletter and brochure supplements in different languages were made available to inform non-English speakers about the recent developments and achievements of CHD PLATFORM. Being also available in print, they could be distributed on different scientific congresses as well as on patient symposia.

Using the established basis, we expect to add to an extension of the European network of all stakeholders. Besides thus contributing to the empowerment of those affected, particularly in those regions with a weak position, we hope to achieve a close cooperation between the scientific and the patient community, leading to an active involvement of relevant target groups into research. The main aim in the future is extending the established offer and using the platform for additional objectives that include, besides research aspects, also issues of health care and patient information.