Work Package 2
Dissemination of the project
RARECARENet
Aidan Hutchison on behalf ofProfessor Ian Kunkler
University of Edinburgh
Information network on rare cancers
Remit :
Objectives and deliverables for WP2How to improve the web-site to reach the different
stakeholders Provide user friendly statistics Search for clinical guidelines Discussion of other means of disseminationDevelopment of a clinical database
Information network on rare cancers
Objectives and deliverables
Development of web-based platformCovering guidelines and info on rare cancers,
centres of excellence, patient organisations, epidemiological data Include social media (Twitter, Facebook)Facilitate collaboration with parties inside/outside
RARECAREnetLink with EUCERD,EPAAC,EAARC, START,ESO
and ECPC websites
Information network on rare cancers
Milestones WP2
Consensus on improvement of website (M4)Dissemination plan including publications (M24)List of scientific meetings for project results (M28)
Information network on rare cancers
Topics
Existing RARECARE website– Existing unused/partially developed functions– Potential new functions
New RARECARENet project– Alternatives to www for dissemination– Our initial proposal
Information network on rare cancers
• Uncluttered• Clear menu• News banner• Multi-lingual
Large volumes of data can be downloaded
Information network on rare cancers
Search tool – in development
Information network on rare cancers
Search Tool Results
Information network on rare cancers
Data Association Tool
Information network on rare cancers
Analysis tool
http://surveillance.cancer.gov/
Information network on rare cancers
Alternatives to www for dissemination
Social networking websites are a family of formats used to publish frequently updated works– Facebook– Twitter– RSS feed
Used to give ‘stickiness’ to websites or projectsAdding content & responding are burdensomeWho will author output and RARECAREnet timely
responses?Dealing with queries from patients
Information network on rare cancers
Alternative to social networking
RARECARENet web site where people can sign up to receive emails about– Regular newsletter with input from each work
package– Announcements– An area of the web site that allows users to
respond to items in the newsletter or announcements
Information network on rare cancers
Knowledge System
LibraryArea for each WP in web siteCommunal area that pulls data together Informed patients make informed choices
– http://www.cmlsupport.org.uk/about
Data considerationsUser requirements
Information network on rare cancers
Clinical database
What data do you want to collect?Patient identifiable information – permission Increase confidentiality – decrease integrity
– How do I know if a patient has been added Information system – the sum of all its parts
Information network on rare cancers
Clinical database / disease registry
What would you like?Case ascertainment?Cross-sectional (i.e. one point in time)?Follow-up (how often)?What sorts of data?
– Demographic– Clinical– Pathological– Radiographic– etc.
Information network on rare cancers
Summary
Existing website– Existing unused/partially developed functions– Potential new functions
New project– Alternatives to www for dissemination– Our initial proposal
But we need your feedback!