Background Polymyalgia Rheumatica and Giant Cell Arteritis (Temporal Arteritis) are linked little-known diseases affecting older people, a majority of whom have not heard of either condition before receiving a diagnosis. In the United Kingdom, booklets are available for newly-diagnosed patients, which give basic information about the conditions and their treatment. Standard treatment is with long-term glucocorticosteroids (usually for several years), which carries the risk of cumulative and severe side-effects. For this reason, patients often seek deeper information and understanding some time into the course of their illness.
PMRGCAuk is a patient-led organisation seeking to provide support and increase awareness of polymyalgia rheumatica and giant cell arteritis. Established in 2010, it now has over 600 members and over 2000 users of its national helpline, web forum, website and local support groups. The author has served as Chair of the Board of the charity for four of the past five years, and through collaboration with clinicians, like many leaders of patient organisations, has learned a good deal about epidemiology, diagnosis and treatment of the illnesses concerned. In 2014 she published a book for patients distilling what she had learned. The volume was first published as an ebook and subsequently as a paperback, and has sold over 1000 copies in 10 months. It is a bestseller on the internet and has received 31 five-star reviews on Amazon
Objectives The purpose of this paper is to share with other patient representatives the experience of authoring and publishing a patient information book online, and subsequently marketing it to a highly specific but international readership using social media. Online self-publishing offers patient organisations a powerful, inexpensive and cost-effective means of providing high-quality information and advice to a targetted audience, and also offers a modest income stream.
The presentation will indicate that, apart from the time taken in writing and editing the work, there is very little expense involved, other than the purchase of an ISBN for each edition (e-book and paperback). In an oral presentation the author will demonstrate the step-by-step process of setting up a volume and making it available on online publishing platforms.
She will also demonstrate methods of promoting the book using social media, including Twitter, Facebook, LinkedIn.
Results Any patient-led organisation can use easitly accessible self-publishing platforms on the internet to set up and publish material for people suffering from long-term conditions, in any language. This will help them meet their core objectives of providing both information and support, and free them from having to work within the constraints and demands of publishing houses. They can monitor sales in real-time on a daily basis, and manage royalties.
Conclusions Paper can be presented in poster format but would work best as an oral presentation, which would allow for ‘live’ demonstration of some of the internet sites used.
Disclosure of Interest None declared