Background With a website with 250.000 visitors monthly, a fanpage on Facebook with over 17.000 fans and a Twitteraccount with about 2.400 followers the Dutch Arthritis Foundation is in touch with a very large group of people with rheumatic diseases. We noticed there is a demand for an online place to meet for people with RMDs in the Netherlands. A place to share their feelings and to ask each other questions. Nowadays there are a lot of social communities on the internet. Although we do have a Fanpage on Facebook, where we share our extensive knowledge about all kinds of rheumatic diseases, the page is accessable for everybody and less suited for more personal conversations. For this reason we started a closed Facebook group for people with RMDs where they can get in touch with peers in a more private setting (within the possibilities of Facebook) to exchange tips, give support and to find answers to more private matters.
Objectives Many people with rheumatic diseases would like to be able to get in touch with peers. On the other hand the Dutch Arthritis Foundation would like to stay in touch with patients and get more insight into what is going on in the community. For that reason we've created a private community on Facebook where patients can meet each other and can exchange knowledge amongst themselves and with us.
Methods In the beginning of 2015 we developed a plan to start an online community on Facebook. As not only the support of the patient community is important, but also the support from the organisation we tried to involve both as much as we could. Our goal was to reach 200 members within half a year and to have activity in the community 3 to 4 times a week.) After we set up the group on Facebook (without any members yet) we made a list of rules and in June started to ask patients to help us find members. About ten people were interested in helping and invited their friends to the group. When somebody had a question they made sure that the question got answered. In this way we started the group low profile. In July we asked two key members of the group if they would like to be a moderator, which they agreed to do. For moderation purposes we created a secret (untraceable) group on Facebook. In August we announced the group on all of our media channels (Facebook public fanpage, Twitter, website, newsletter etc) after which the group grew rapidly.
Results Our goal at six months was to have at least 200 members, by the end of 2015 we counted more than 1.700 members!
The group is very active and the amount of subjects is enormous. At least every two hours somebody posts a question or reacts on someone else's question, if not more often. The converstation contains subjects like medical problems, health insurance and solutions for daily activities. The members introduce themselves, ask questions, support each other en share their experiences and knowledge.
Conclusions As the group got off at a tremendous pace, we can conclude that it satisfies the (online) needs of people with rheumatic diseases. People are positive about the group and are likely to stay and help each other. It is still a quest for the Dutch Arthritis Foundation to decide what topics we can contribute to. While we do believe in the power of peer to peer conversations, we also think people with RMDs can benefit from our knowledge. The big question for us at this moment however is when and how often to contribute ourselves.
Disclosure of Interest None declared