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

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

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

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

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

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

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

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

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

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

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

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