Work Package 8 - Dissemination and Evaluation
To disseminate a comprehensive and consistent set of ideas arising from the results from the EUROlinkCAT project in order to maximise their impact.
To evaluate the EUROlinkCAT project
Description of Work and Role of Partners
This WP will be led by Dr Amanda Neville (UNIFE), Professor Anna Latos-Bielenska (PUMS) and Professor Ingeborg Barisic (KDB).
The focus of this WP is to target utilisable information in appropriate ways to the different stakeholders in this project, from Public health policy units and professionals to individuals and caregivers recognising that a wide range of dissemination methods are needed given the wide range of stakeholders that will be interested in EUROlinkCAT.
Results from WP7 will inform the additional dissemination of information using new technologies, such as Facebook,
to individual members of society. The specific tasks are :
- Create an email list of potential stakeholders to include parent support groups, special interest groups in addition to
existing European networks such as ICORD and EUcerd and Public Health Bodies. (KDB) (month 2)
- Design promotional material for the website including an information leaflet and distribute to potential stakeholders.
A strategy for dissemination suitable for different countries (languages) will be agreed. (UNIFE) (month 3)
- Organise a consultation and training meeting of Registry Leaders in Croatia and any connecting parents using webinar
and skype to finalise the decisions about research priorities. Specific areas of research that stakeholders are interested in
and communication pathways and methods other than publishing scientific papers for dissemination will be considered.
(KDB) (month 9)
- Update website, information leaflet and other promotional material, ensuring that early results (such as Data quality
indicators) are visible and comprehensible.
- Continue to investigate and liaise with other European stakeholders.
- Poland does not have established national electronic healthcare databases. A meeting with relevant Polish experts
will be convened to discuss results from WP2 and WP6 to inform best practices for creating electronic databases.
Dissemination and Evaluation at end of project
- Organise a dissemination conference in Poland to agree on a set of recommendations to improve the mortality, morbidity and education of children in Europe with congenital anomalies. Recommendations about establishing devolved databases including issues around informed consent, ethics approval, data security, patients’ rights to their own data and data release will be presented. One session of the workshop will be specifically devoted to the establishment and continued development of the EUROlinkCAT cohort of devolved databases and their strength over using unlinked routine health care data. The Workshop will be the occasion for a coordinated press release in the European countries. An evaluation of the project by the stakeholders will be included. (PUMS)
- Use the results from WP7 to inform the additional dissemination of information using new technologies, such as Facebook, to individual members of society in different countries.
- Ensure lay summaries are available for all major results.
- Disseminate the project’s findings with Public Health Institutes across Europe about children with Congenital
Anomalies and the associations with mortality, morbidity and education and how variations across Europe influence policy making.