Background the democratization of access to the Internet has dramatically changed the behavior of patients. The number of searches related to health topics is growing. Every month in France, 165,000 searches are made with the key word “inflammation” and 74,000 with “rheumatoid arthritis” (RA). Many websites are available and it becomes difficult to identify reliable sources. At the same time, few resources are available to those affected by juvenile idiopathic arthritis (JIA).
Objectives Enable patients to access reliable information 24/7 on RA and JIA through a website focusing on quality of life.
Methods The Patients Association ANDAR interviewed 10 rheumatologists across France on the relevance of this project and the reasons that would lead them to invite their patients to visit the website. A focus group consisting of five patients (4 JIA and 1 PR), a rheumatologist with a double expertise (pediatric and adult) and a representative of the association was held.
The ANDAR volunteers were also involved in the creative choices and contents revision.
An agency specialized in communication with the young audience was mandated.
Results Rheumatologists were enthusiastic and gave many recommendations:
– the website should not only be designed to address teenagers but also young adults and adults;
– JIA and RA should be distinct;
Thanks to a collaborative work of the association, the focus group and the agency, 19 dossiers were developed, gathered in 4 chapters : “Understanding and managing my disease”, “Better enjoying my everyday life”, “Better moving around” and “Better enjoying my family”. Each chapter offers a FAQ, tips and tricks as well as testimonials and external resources (links).
The writing is definitely accessible and friendly, blog style to create a bond with the reader: “BETTER LIVING MY RHEUMATOID ARTHRITIS.COM”, the website that unlocks ... your fixed opinions about RA !”
Conclusions In 11 months the website www.mieux-vivre-ma-pr.com received 29,000 visits of 4 minutes on average. The most popular pages are those related to RA treatment and nutrition. An upgraded version will be available in Q2 2013 with more content (a 3D movie about the disease, more FAQ, quizzes, a new home page to optimize SEO and adding social networking features).
Acknowledgements Thanks to : the rheumatologists who have been interviewed and gave their input, the members of the focus group, Dr. Julien Wipff, Dr. J David Cohen, the Junium agency.
This work was supported by AbbVie
Disclosure of Interest None Declared