Unfortunately, most attempts to place research calls in online support groups are clueless and clumsy. For instance, posting calls directly for research participation without asking the administrator(s) first is not welcome in many groups.

I delete respective posts in my community.

If you are a researcher and you consider to use the resources of online patient communities for your study, this is how you will succeed most likely:

1. Contact the admin(s) and ask for permission to post your promotion in the group
2. Describe your project precisely and include eligibility in your message to the admin(s) and in the post
3. Point out that you are working for a respectable university/institution/organization
4. Offer to share your findings and recommendations with the admin(s) or the group later on

Note from SADS Channel administrators:  The SADS Foundation supports research by serving as the critical link between patients, healthcare providers, and researchers.   Read about our role in research and our research policy here.
If you are a leader of an online community that serves the SADS population and we can be of assistance, don’t hesitate to contact us.   

The trolls used the night from August 28th to August 29th 2014 well. When I – the founder and administrator of the Living with an ICD Facebook Support Group- was sleeping peacefully, one of the troublemakers wrote a short post about Implantable cardioverter-defibrillators (ICD) going off during sex and “spoiling the mood”. Two others spammed the thread with useless and raunchy comments over a period of six hours.

In the morning, I noticed the sex post with its 600+ comments, a record by far until then. It was suspicious to say the least.

The thread on and itself did not violate my group’s guidelines. I allow debate and controversy related to ICD experiences, because my closed support group on Facebook should not be a comfort zone. But when I cross-checked the comments, I realised the trolls had achieved their goal. The other members of the group had fed them big time.

I did not blame the members. They tried to re-establish a civilised discussion. Rather, I was annoyed at myself because I did not inform the community on how to deal with trolls. It took me about three hours to clean the post from the nasty comments and to identify the perpetrators. I banned them from the group. I thought I had solved the problem. I was wrong.

The trolls from that evening joined forces and founded their own support group with a similar theme.  I was told it was very similar to my group except for the spin to humor and entertainment.  They even used a copy/paste version of my group rules.

All of a sudden, I was losing members while the new group was growing rapidly. It was put to me that they were trying to steal and attract new members from my group “behind my back”. I thought it was bad style and impertinent considering the efforts to grow my group’s reach. I was upset and uncertain. But I drew a few lessons from this unpleasant episode:

1) Do not get irritated by short term developments. If the focus and strategy of a support group are right, they will withstand turbulences.

2) Intervene early if you see a post running amok. Do not hesitate to kick trolls and troublemakers from the group quickly. I certainly was too lenient in the beginning.

3) State your “house rules” clearly and enforce them.

4) Enlighten the community on how to deal with antisocial behaviour in your group. Tell them not to “feed the trolls” and to report.

5) Provide the community with valuable and useful content, for instance with articles, polls and videos.

Since then, I did not encounter another disruptive incident in my group any more. On the contrary: It is growing rapidly and is the biggest ICD community on Facebook with 4600+ members. Moderating the group in the morning on the way to my workplace has become a daily ritual. It is like talking to an extended family.