Background A doctor in Amsterdam, Jan van Breemen, founded the Dutch Arthritis Association “Reumafonds” in 1926. Within 88 years, the way we look at patient relations has changed. Compared to only a decade ago, we are now in direct contact with an enormous number of patients with varying backgrounds. Also, it goes fast. Nowadays we touch base with patients through Facebook, Twitter, an online panel, and of course our traditional helpline Reumalijn, which has expanded to email and patient information on our website. And we monitor all kinds of other online and social media. We have learned some lessons, which are important to make sure we are moving in the right direction.
Objectives We have seen a fundamental shift in patient relations and how patients can find and reach us and each other. Especially social media have given us tremendous opportunities to get in touch with a broader patients' base, but also gives us challenges to deal with. The next step involves translating online issues into patient advocacy, empowerment and information on our website.
Methods In 1999, the Dutch Arthritis Foundation (DAF) developed Reumadorp, an online community, where patients with rheumatic diseases could get in contact with each other. It existed for nearly 10 years. In the hay days, nearly 46.000 patients were involved in this online village. Undoubtedly, the internet and social media have given us a whole new opportunity to reach a far larger group of patients and their surrounding friends and families than before. 2012 was the year we gained our first experiences with other online activities. For example when the Dutch government limited patients' access to long-term physiotherapy in January 2012, we did not only receive many questions through the Reumalijn, but we also saw a quickly growing protest online. We set up an online registration point following a week of patients' complaints and worries. Nearly 4500 patients shared their thoughts and worries with us. In 2013, we built on our online work with an online community manager who started at the DAF. This manager is responsible for monitoring social media. A social media monitoring tool helps us getting an in-depth insight into conversations on social media. Our strategy is regulary monitoring relevant issues, posting issues and asking for respons, facilitate sharing and conversations within patients.
Results Reumadorp was a huge success. But as it goes with online successes, it grew out of fashion when other online platforms and forums emerged. We stopped Reumadorp around the time that social media like Twitter and Facebook hit off in the Netherlands. Facebook (8,000 followers) is now one of our most important means for getting in touch with our target group regarding topics that matter to them.
“In winters it is hard to keep on moving outside? Do you have some tips?” 17 shares, 134 likes, 73 respons, 5.178 reach.
Conclusions Social issues definitely come to the surface faster and we are able to more rapidly and effectively stand up for people with arthritis. The benefits of being present on social media are undeniably immense. However, social media and the mobile internet world also pose challenges for us. For example, we are still looking to examine how we can efficiently channel and analyse online interaction. The (mobile) social media world is a world of being “in touch” 24 hours a day. Can we, and do we want to, meet this expectation?
Disclosure of Interest None declared