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Published byKenneth Marsh Modified over 9 years ago
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Work Package 2 Dissemination of the project RARECARENet Aidan Hutchison on behalf of Professor Ian Kunkler University of Edinburgh
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Information network on rare cancers Remit : Objectives and deliverables for WP2 How to improve the web-site to reach the different stakeholders Provide user friendly statistics Search for clinical guidelines Discussion of other means of dissemination Development of a clinical database
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Information network on rare cancers Objectives and deliverables Development of web-based platform Covering guidelines and info on rare cancers, centres of excellence, patient organisations, epidemiological data Include social media (Twitter, Facebook) Facilitate collaboration with parties inside/outside RARECAREnet Link with EUCERD,EPAAC,EAARC, START,ESO and ECPC websites
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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)
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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
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Information network on rare cancers Uncluttered Clear menu News banner Multi-lingual
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Large volumes of data can be downloaded
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Information network on rare cancers Search tool – in development
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Information network on rare cancers Search Tool Results
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Information network on rare cancers Data Association Tool
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Information network on rare cancers Analysis tool http://surveillance.cancer.gov/
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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 projects Adding content & responding are burdensome Who will author output and RARECAREnet timely responses? Dealing with queries from patients
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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
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Information network on rare cancers Knowledge System Library Area for each WP in web site Communal area that pulls data together Informed patients make informed choices – http://www.cmlsupport.org.uk/about http://www.cmlsupport.org.uk/about Data considerations User requirements
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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
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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.
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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!
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