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Pat Fearnside Vasculitis patient and Editor of the Route Map for Vasculitis

Pat Fearnside Vasculitis patient and Editor of the Route Map for Vasculitis. Purpose of Presentation. Overview of Approach : Explain need for a Route Map Outline development activities including : Key decisions required Large data gathering requirement Review End Result of the work.

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Pat Fearnside Vasculitis patient and Editor of the Route Map for Vasculitis

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  1. Pat Fearnside Vasculitis patient and Editor of the Route Map for Vasculitis

  2. Purpose of Presentation Overview of Approach : • Explain need for a Route Map • Outline development activities including : • Key decisions required • Large data gathering requirement • Review End Result of the work

  3. Why is a Route Map Needed? • Raise awareness of Vasculitis • Provide a single source of wide range of topics: • Medical • Issues encountered when living with Vasculitis • Counteract unreliable information on the web

  4. Step 1 – Identifying our audience • Vasculitis patient/family • Medical professionals  • Social Service professionals 

  5. Step 2 – Determining our aims • Provide comprehensive document • Source reliable information on • The Vasculitis diseases • Living with vasculitis

  6. Step 3 - Deciding on Content Approaches used included: • Brainstorming • Discussion with Members • Discussion with Medical Professionals • Questionnaires to Members

  7. Step 4 - Collecting data • Medical data from • Our own resources • Internet sources • Medical textbooks • Health Service and Government Benefit info • Pamphlets, web and webcasts • Info from vasculitis patients and carers

  8. Step 5 – Developing Medical section • Provide First draft • Verification by Vasculitis Physician • Iterative Revisions for changes to content and layout

  9. Step 6 – Evaluating distribution channels • PDF for website • Ease of access • Easily updated • Inexpensive • Printed copy • Easily read • Instant reference • Requires periodic revision • Expensive to produce and circulate

  10. What is our Route Map? • 114 page Encyclopaedia of all the things Vasculitis • For patients • For professionals • Our “Vascupaedia”

  11. Step 9 Launching Vasculitis Route Map • Launched in May 2012 • Media • Contact with vasculitis physician • Newsletters • Facebook • Health Unlocked • Gathering feedback • 99% positive feedback • Medical professionals • Members

  12. On-going Activities Immediate: • Continue raising awareness • Further media involvement Future: • Continue raising awareness • Further media involvement • Ensure updated • Notify recipients • Use information to update webs

  13. Dr Matthew Morgan • Professor Lorraine Harper • Jessica Burke and Genetic Alliance UK • Department of Health

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