Work Package 7 - ConnectEpeople
To connect researchers with families who live with congenital anomalies (CA) across Europe to involve them in setting
research priorities and ensuring that research results are disseminated in a meaningful way.
To establish a sustainable e-forum, “ConnectEpeople”, for providing regional, national and international support to
families with congenital anomalies through maintaining the links between the EUROCAT congenital anomaly registries
and the families.
Description of Work and Role of Partners
This WP will be led by Professor Marlene Sinclair (UU) and Professor Anna Latos-Bielenska (PUMS). Redburn Solutions Ltd will provide
the IT support and expertise required to establish the e-forum “ConnectEpeople” ConnectEpeople is about registries contacting parents and carers of children with congenital anomalies in their regions and creating a network linking them with local, national and international registries and evidence-based information resources.
This WP will scope the current networks available within the EU registries and their links to parent groups and evidence based resources. It will then survey parent groups to identify their specific information needs related to one of four congenital anomalies: Down syndrome (a visible anomaly with many health issues including intellectual disability), Severe congenital heart defects (non-visible anomalies with very high mortality requiring multiple surgeries), Spina bifida (a visible anomaly which can be physically disabling and intellectually disabling with potential to require surgery) and Cleft lip with cleft palate (a visible anomaly with associated speech problems requiring multiple surgeries). An eforum will be created to link parents with professionals and researchers. This forum will connect the micro network of parent groups at individual registry level first then with each other at a meso level and at the macro level with the full EUROlinkCAT researchers thus creating a new line of communication to directly connect the researchers and the parents. The resulting e-forum will work together with researchers to interpret data emerging form the various WPs on morbidity, mortality and education; using m-technologies. The data will be translated into meaningful messages that are relevant, accessible and easily understood using info graphics, wordles and videos where appropriate.
The specific tasks are :
- Each registry will identify at least one parent support group concerned with each of the four congenital anomalies chosen and work with them face to face or by twitter, Facebook, email, skype, webinar, live chat or blogging to identify all of the current communication networks they use to obtain information about their children’s conditions. The availability and quality of the data in relation to morbidity, mortality, and education will be reviewed. Each local registry and parent group network will be linked to create a virtual stakeholder forum “ConnectEpeople”, where a summary of this network scoping exercise will be presented.
- Each registry will communicate to the families what information is being collected plus what specific hypothesis are planned to be investigated in EUROlinkCAT. This information will be produced in English and the Registry Leaders will be responsible for communicating it to their network in their native language. The parents views on additional hypothesis will be sought firstly within each local registry and parent group network and then on “ConnectEpeople” forum. A face to face consultation meeting involving registry leaders and any connecting parents using webinar and Skype will finalise the decisions about the research priorities.
- In years 3 and 4 two sets of key findings (one each year) from the WPs will be placed on the “ConnectEpeople” forum and Registry Leaders will be responsible for communicating these to their network in their native language and consulting with them about the interpretation and dissemination of these key messages. Live face to face meetings involving registries and connecting parents using webinar and skype will occur. A graphic designer will develop suitable images that will facilitate interpretation of complex data on morbidity and mortality issues for the web. In year 5 the effectiveness of the e-communication system will be assessed using a mixed method approach. Google analytics will be used to demonstrate the number of visitors to the “ConnectEpeople” forum and their online activity. Registry Leaders will be responsible for asking people to complete a survey to explore perceptions of impact resulting
from “ConnectEpeople”, to explore new networks and developments that have occurred during the study and to evaluate what worked well and what improvements could be introduced.
- The long term outcome anticipated from this WP is an E-connected European Consumer-led Stakeholder Group that operates post project delivery and contributes to the continued work of EUROlinkCAT and EUROCAT.