Members of PatientsLikeMe interact a number of ways: viewing profiles, reading treatment and symptom reports, and posts in our forums. In contrast to many of the most heated arguments on the internet (politics, religion, Star Trek...), the discussions on PatientsLikeMe have a tangible impact on people's lives. Patients with a chronic condition often spend many hours at their computer, and the online communities they belong to are as much a part of their social world as neighbors, church, or even family.
Whilst there is no perfect solution to moderating a forum, we've tried to write down some of our collective knowledge. We hope it might provide some insight into our philosophy and may even be of use to others who moderate their own communities.
Reconciliation, not resolution: What if your users start an argument, do something inappropriate, or are hurtful to another user? First off, it's important to recognise that what you say sets the tone, and scolding a user in public for a misdemeanour can be incredibly frustrating for them. Nobody thinks of themselves as unkind or inconsiderate, and embarassing them in this way will only make them more entrenched and possibly even disruptive in the future. Much better to send a discreet private message "behind the scenes" and let people fix their own mistakes so that they know they can stay here even if they've messed up (which we all do). We've seen users spitting blood at one another only to apologize a few days later and genuinely mean it, often forming much stronger friendships as a result. Contrast that with a temporary ban or an admin-imposed sullen handshake; in the long-term that solves nothing.
It's about community, not answers: A common temptation is to provide exhaustive answers to every question posed. Although this might provide a good answer for the users, it sets up a dynamic: ask a question and it will be answered by the "proper authorities". A general bit of guidance would be to say that whenever you see a question in need of answering leave it for a day or two before responding. That way you give another user the opportunity to answer it.
It's a job, not a hobby: Moderating a forum is about being a professional, not a participant. It's important to set boundaries for your own behavior and recognize how other users (who are nothing like you) might interpret it. For instance, I may have, on occasion, said a naughty word in public. In general though I tend not to curse on forums because I know it would upset some of our members and perhaps affect the way they saw me. It's not just about the established veterans who would know I was fooling 
around, it's for the newbies who have just come in through the door and want to know what this place will be like for them. If a post winds you up and makes you annoyed, feel free to write a lengthy, bile-filled diatribe of your own. In Word. Then delete it, let the post sit there till tomorrow, and come back to it in the morning.
Aspirations, not rules: In our community, we took an intentional stance not to make rules. If you make rules, rules are broken, and broken rules require consequences. That requires authority and enforcement, not things we’re keen to welcome into our community. Instead, our forum has a code of conduct which states what ideal members are: Ideal PatientsLikeMe members:
- Ask questions to help themselves and other members learn about their condition
- Welcome newcomers to the community
- Keep personal information up-to-date, such as disease progress, symptoms, and treatments
- Share their opinion with others in a considerate way
- Respect confidential information and don't transmit other users' information outside the PatientsLikeMe community
- Enjoy healthy debate on the forum but stick to the argument rather than making comments directed at an individual user
- Check in on other users, make sure they're OK and help them to keep their profiles accurate and up-to-date
- Share personal experiences without trying to provide medical advice
- Give feedback to the PatientsLikeMe Team about potential improvements, questions, or comments about the site
Does it work? Well, we've been running for 2 years now, in which time we've had 15,000 registered users, 100,000 + posts and 13,000 threads posted in our forums. Fortunately, we've only ever had to ban a handful of people. For the most part, if a group of users have had a heated argument about something, we now have a strong enough self-regulating ecosystem that it usually sorts itself out in a matter of a few hours.
Which means we can focus on what's really important to our users: improving their health outcomes.