Demo projects
There are a number of demo projects among the deliverables of the project. The ultimate deliverable will be the complete website solution, signposting the reader to any or all European database, activity, project guideline, clinical trial. Each component part of the final website will be carried first as a demo, for all to read, validate and improve. In particular a number of questionnaire studies will be featured, and a number of social networking experiments featured. It is likely that we will organise groups of patients to interact by commenting on a clinical trial or a result of a trial, or on a guideline or a proposal for a guideline. Each project will be visible as a 'demo' here.
Communicating Risk in Familial Cancer - The Patient Perspective: Information and support needs
Dr Rachel Iredale, Prof Lesley Fallowfield, Carol Maddock, Maureen Gilbert, Cathie Lockenwitz, Francisca Bach Kolling-Dandrieu and Roswitha Britz discuss informed decisions. At the time of your diagnosis did you feel you had sufficient information to make informed decisions? Would it have been helpful to have been given information in a different way or format? Did anyone use tools to describe risk calculations/probabilities - did they help or hinder?
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Communicating Risk in Familial Cancer - The Patient Perspective: Skills of communicators
Dr Rachel Iredale, Prof Lesley Fallowfield, Carol Maddock, Maureen Gilbert, Cathie Lockenwitz, Francisca Bach Kolling-Dandrieu and Roswitha Britz discuss communicating effictively. Who are the health professionals generally involved in communicating genetic risk in your country? Does it vary and are they the right people? What do you think are the skills needed? How do we get people to be better communicators if 'cook book' manuals don't work?
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Communicating Risk in Familial Cancer - The Patient Perspective: Telling the family
Dr Rachel Iredale, Prof Lesley Fallowfield, Carol Maddock, Maureen Gilbert, Cathie Lockenwitz, Francisca Bach Kolling-Dandrieu and Roswitha Britz discuss talking to the family of patients with a genetic risk of breast cancer. What advice or support about how to tell other members of your family about being a gene carrier were you given? What works well?
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Communicating Risk in Familial Cancer - The Patient Perspective: Improving Risk Communication
How can we improve risk communication? Dr Rachel Iredale, Prof Lesley Fallowfield, Carol Maddock, Maureen Gilbert, Cathie Lockenwitz, Francisca Bach Kolling-Dandrieu and Roswitha Britz discuss risk. If you had to pick one thing that you think would improve risk communication what would it be? How can we speed up the process of adoption of best practice?
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