Work package 11: Ethics and Dissemination to Parents, Patients and Society

Work package leader

Anne Keatley-Clarke




 Anne Keatley-Clarke

Children's Heart Federation



Description of the work package

The European Congenital Heart Disease Organisation (ECHDO) exists for  Congenital Heart Disease (CHD) patients of all ages and consists of members of the national patient organisations for children with heart disease from 24 European countries. The Children’s Heart Federation (CHFED) is a national patient organisations which will develop and distribute consent leaflets for the clinical trials to LENA patients and parents in all participating countries on behalf of ECHDO.

The Children’s Heart Federation will train individuals to deal with questions and concerns from patients in each participating country. Personnel from CHFED will train representatives from each participating country on issues concerning paediatric drug development. They will also ensure that a service is offered referring patients to the relevant centre for appropriate medical input and for answering general queries and questions.

The Children’s Heart Federation will also transmit information from the Ethics and Data Safety Monitoring Board in lay language via their own website, through member websites and through a regularly produced newsletter. Information about the LENA project will also be displayed on ECHDO’s website, on the member group’s websites and through social media.

As the Serbian parent’s organisation for children with heart disease is not yet a member of ECHDO, the LENA project will be the starting point of collaboration between this organisation and the Children’s Heart Federation as one of ECHDO’s national patient organisatios for children with heart disease. The Serbian organisation will be gradually integrated into the ECHDO to fully benefit from this network. The Children’s Heart Federation will give lectures at European medical meetings, have contact with the media and editors of scientific journals, and participate in press conferences. Dissemination activities are of major importance to achieve greater awareness of newly available knowledge, especially when the scope of a project such as the LENA project involves many countries and includes a large number of personnel.

Dissemination activities are therefore directed at both internal and external audiences. An intensive programme of internal dissemination is critical for the success of the LENA project. Transfer of technological know-how is central to the accelerated development of expertise in several of the centres. On the other hand, a defined set of actions need to be implemented at an external level to spread awareness of the results of the LENA project to the largest possible audience outside the consortium.


Our main objective in work package 11 is to disseminate the results generated by LENA. The objectives can be further broken down as follows:

  • To reach all potential  audiences, with specific attention being paid to communication with patients and their parents or caregivers
  • To disseminate information on ethics,  consent and other matters relevant to lay people
  • To regularly ascertain the relevance of the LENA objectives and scope by facilitating periodic interaction between the General Assembly, the Steering Committee and the external Advisory Board
  • To ensure that participants in the project are dealt with ethically, and that they are well informed and correctly supported
  • To enable patient  and public involvement  in planning,  delivery and evaluation of the LENA project



The tasks included in our work package 11 are described below:


  • Ethics: The approach taken will be based on the four principles described by Tom Beauchamp and James Childress in their publication "Principles of Biomedical Ethics" (62008):
  • Respect for autonomy: the patient has the right to refuse or choose their Treatment 
  • Beneficence: a practitioner should act in the best interest of the patient
  • Non-maleficence: "first, do no harm" (Primum non nocere)
  • Justice: concerns the distribution of scarce health resources, and the decision of who gets what treatment (fairness and equality)
  • Our approach will also take into account the respect for the person because the patient (and the person treating the patient) has the right to be treated with dignity, truthfulness and honesty. 
  • Design of a detailed dissemination plan: A dissemination plan is being designed including both internal and external dissemination activities.
  • Internal: a programme of internal meetings will be prepared by the LENA Steering Committee using a virtual network
  • External: target groups will be identified in the first step. For each target group, the route to establish contact will be decided and a “marketing strategy” to reach the target will be identified. Moreover, the rules for dissemination will be established, with consideration of what knowledge is to be disseminated and to what extent it is worth disseminating that knowledge (according to the rules agreed upon in the Consortium Agreement).
  • Develop a corporate project identity: The development of a corporate project identity is a core task for a project which brings together European researchers in multiple countries who will be working together for the first time. Besides creating an internal commitment to the project, it is important to establish a consistent public perception.
  • Therefore a logo and a website are the two first steps which will pave the way for an effective PR strategy of the project.
  • Furthermore, the researchers will be supported by providing them with a custom designed presentation template. This template will be available in the internal part of the website and can be used to present the project data at conferences and other public appearances.
  • A project flyer and poster will be designed and will include information about the project to be disseminated at meetings and conferences.
  • A flyer and/or poster in lay-language will be designed to address parents.
  • The core website will be hosted and maintained by ARTTIC and organized to allow regular updates and retrieval of data. The website will also include a password protected portal or intranet which is accessible only to project participants. This intranet portal will provide access to helpful documents, schedules, and other material of interest to or needed by participants. Collaboration is envisaged with the official professional societies. The website will publish news based on the latest research publications by the participating centres and by other research groups. In addition, positions available in all the participant centres will be listed in order to facilitate the exchange of personnel and to attract the best available scientific personnel. Finally, links to other relevant web-sites will be provided.
  • The output of the project will be disseminated in an efficient and timely fashion: A biannual e-newsletter that collects all the news in press, the new projects proposed or developed by the participating centres, and the research positions available in each centre will be prepared. It will be distributed via e-mail to all LENA partners and to all members of linked patient’s associations as well as to the official professional societies both inside and outside Europe. At the end of the project an international conference will be held to present the project results and raise the awareness of the public.



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