Quality of lupus information on the web is a real issue. When people living with lupus have a question about their disease, and that is often the case both right after diagnosis and on the long run, the next doctor appointment is often perceived too far away to wait, and internet search becomes the first next step. Unfortunately, social media usually present worst case scenarios or horror stories. Some websites provide reliable information, but most often will be discounted due to their commercial aspect. Others are sufficiently independent, but have a limited reach or content, often only in English.
As you know, in early 2021, ERN ReCONNET endorsed a LUPUS EUROPE project to translate the excellent book ?lupus in 100 questions? developed by the French FAI2R group in collaboration with patients. This booklet, also available on the web under rhumatismes.net has received excellent reviews from French speaking patients over the years, and we felt that making such information available in multiple languages was an effective way to provide access to quality information for all in Europe.
Over the past year, Lupus Europe with Eric Hachulla and the initial authors have translated (and adjusted where needed) the original text to international English, replacing also French-specific questions by top questions selected by the Lupus Europe Patient Advisory Network. In parallel, we have designed the website that will house all language versions. The website, in English only for now, is going live today! You can view it at www.lupus100.org . Please feel free to disseminate this address widely to your members and through your social media channels!
With the launch of this website, we are now ready to start the process of multilingual translation. Based on our French to English translation experience, we have designed a process to ensure the medical quality is preserved while using lay language. We are now ready to expand and will prioritise languages where we have both a PATIENT and a LUPUS DOCTOR volunteers to review the draft translations. Once that pair is identified, we will provide them with a side-by-side word document containing the English text and the national language draft translation. Both Doctor and patient will then review and improve, where relevant, the wording of this draft version. Depending on the languages, the quality of the draft might vary, but we are committed to translating it in all European languages where we can find such a doctor-patient duet. The translating doctor(s) and patient(s) will be recognised on the relevant language version of the website?s author?s page.
Our ultimate goal is that any person living with lupus in Europe will have access to quality answers to her/his questions in a language that he/she understands well, and at least 80% in their primary language. We also hope to drive it to the top google answers list for people searching information about lupus. These are ambitious goals, but we believe that this project will lead to better education on lupus, and hence better care to all people living with lupus in Europe, regardless of their country and language.
Please tell us by email at [email protected] who from your organization is ready to join in this project as the translation support patient for your country/language to help with the validation of the text in your language. Separately we are working with SLEuro and ERN ReCONNET to identify specialised lupus doctors who could act as the translation support doctors for each European country/language; as soon as we have a patient and lupus doctor translation support match for your country/language, we will let you know. Timing wise, we should be able to start early November, but will have some flexibility as the full roll out will take a while.
Next steps for you :
Visit the website: www.lupus100.org
Disseminate the website to your members and through your social media channels
Send us the name/email of the person that would volunteer starting in November, to work on the draft translations we will provide (and preferred timing, if any).
If you have any questions, do let us know!