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

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Warming your heart to the web

A new online platform brings together patients, parents and medical professionals to exchange views and knowledge about congenital heart defects (CHD).

Digital Economy

Since the advent of the internet, sufferers of numerous diseases have found ways to share their experiences, learn from each other and even find relief through the exchange of information. But not all the information in the virtual world has been reliable. One enterprising EU-funded initiative, CHD Platform, has created a powerful online 'arena' for patients, parents and medical professionals to enable discussions on congenital heart disease. The project has achieved a web-based information and communication platform on the disease to crosslink patients with the medical community. The website, Corience.org offers comprehensive information in English, German and Spanish. Cooperation with renowned scientists from various fields and a rigorous review process has resulted in easy-to-understand articles on the website. A newsletter and brochure supplements in different languages were also made available to update non-English speakers about the recent developments and achievements of the CHD Platform. Arguably the project's (and website's) major achievement was to relay research findings to patients, fostering dialogue and debate on health research issues of interest. Integrating the perspective of all stakeholders is helping to sow mutual trust between the medical and patient communities. Networking was also promoted through three European workshops in Barcelona, Berlin and Bruges to reach as many actors in the CHD field as possible. This has encouraged fruitful exchange of ideas and information on developments focusing on research and care related to the disease. The workshops also strengthened the engagement of different patient and parent organisations, as well as the establishment of several new ones. Integrating players and participants from eastern Europe was another milestone that was successfully achieved through these workshops. In the future, key healthcare issues and patient-related information will continue to be part of the website. By empowering those who have congenital heart disease, suffering, fear and confusion will be alleviated. This also means misinformation will be tackled and correct treatment will be encouraged, resulting in cost efficiencies for both patients and hospitals.

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