While the most common adult leukaemia, Chronic Lymphocytic leukaemia (CLL), is still a rare disease. The ability to considerably improve your quality of life by learning about the disease make CLL a natural match for a global support community, so there’s a strong synergy with HealthUnlocked’s mission.
As Nick covered how we launched a community for both UK residents and those around the world, I’ll cover what we did over the last few months, particularly after the platform upgrade in July, that helped ensure our community is so vibrant.
Nick approached me to assist him with the administration of our community about 6 months ago and with me living in Australia, that gave the community 24 hour coverage. Nick can also relax in knowing that for part of his waking day, someone else is monitoring content and making certain that calls for help get prompt attention.
We believe that our success boils down to the fact that we developed our community atmosphere based on two key pillars:
- where you can “talk” to people who understand what you are going through
- where respect is observed for the differing opinions of others
We maintain a wide range of content as we balance the more serious with the occasional light hearted items. When it comes to medical content, we maintain a high standard for content veracity so that members can feel confident in taking up suggestions with their medical specialists for further investigation.
Some of the activities we performed that may have contributed to our success were:
- Publishing new content (posts/questions), almost daily, to encourage users to keep visiting the community and engage with each other (as members receive a daily update with new content in the community)
- Establishing categories based on feedback from the volunteers in our community
- Pinning helpful posts and questions for all members to easily refer to
- Posting interesting polls regularly (approx monthly) to engage the community and encourage discussion
- In the instance of technical difficulties, providing those affected with support until HealthUnlocked resolve the issue
- Challenging our ‘lurkers’ to become more involved. Our volunteers and power users supported this initiative as this helped bring the community to life
- Developing and pinning a reference post containing a reliable and current international list of CLL Information & Resources
- Providing guidance on how to use some of the features of the upgraded website which include some of the ones listed here:
- How to navigate the new platform
- How to privately contact others with private messages
- How to use bold and italics in your posts and questions
Most importantly, we believe we succeeded in providing a place where members can unload when they feel low, are going through a tough time or just need to know that others are there for them.
I’ve personally been greatly encouraged by seeing our community change from a small group with a few regular posters to one that has doubled in 6 months to become self supporting and needing less involvement by administrators and volunteers. It has been great to see new members join and take on a self appointed role of being supportive to other members, both new and old.
I hope you can find something from the above to improve your community spirit and that we’ll soon be reading about your success!
– Neil, CLL Support Association Administrator