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!