Photo source: jessicahtam

Take Heart: Tips for Building a Supportive Online Community

Sitting beside my 11-week-old son’s hospital bed in the cardiac intensive care unit after his open heart surgery, listening to the doctors and nurses talk above me, I desperately wanted someone who understood. I was alone and frightened.

Consider the scariest time in your life, and think about the people who supported you through that. Most likely they are friends or family who were there for you, holding your hand, listening, understanding, and relating to you. But what if you were alone? With no one to really understand. Now, with the ever-changing landscape of technology this kind of support can happen virtually.

The ability to be everywhere (like bedside in intensive care with a scared mom) is important for the success of an organization whose core mission is to support and educate others. Yet, for organizations who serve patients and families it is vital to find a balance between cyber world and personal connection. Being anonymous is not appealing when you’re trying to build personal connections but, when the subject matter is personal experiences, medical journeys, and intensely private topics, users want to feel comfortable and safe.

Our job, as community managers, is to find that balance between safe and secure and personal connection and then create that. While designing a community for our members, I have continued to ask the questions: What makes you feel safe? What makes you want to engage? Different communities will expect different levels of safety or security, so first and foremost find out what your members need and want. So where is the balance I’ve found?

Establish Community Ambassadors

Providing a secure area that is staff moderated and safe is important. It is also important to build an expectation of trust within that community so that users are not only told they are safe, they feel safe when talking. Each community should have an established ambassador who can lead and moderate as a peer. This is an important part of providing a safe and open place to talk.

For example, a group of teenagers who are looking to connect with each other will feel more comfortable with a young adult as the ambassador/moderator versus an “outsider” who may be present. These outsiders tend to stifle conversation and reduce the bonds that can occur naturally. Any group who feels “watched” will certainly not be open and honest. Providing this peer support and guidance from the inside will also build trust in the safety of the community. Knowing that the community ambassadors are present and engaging is comforting to users.

Reduce Anonymity and Discourage Lurking

Another major trust factor to address is user profiles and user names. Some people may believe that it is “safer” to be anonymous, when it may not actually be. Would you feel more comforted from a grayed-out face with the name anon1234, or from a warm (real person) picture with the name GrandmaAnn?

Knowing who you are talking to can help to create a personal relationship and that builds trust. It is also much easier to cyber bully when you are hiding behind an anonymous profile. Somehow the idea that people “see” your face and know who you are deters some people from being mean. Trust leads to security and more openness from all parties.

The moderator of the community will be able to monitor each person’s contributions and the discussions. Reduction of lurkers is vital as well. Having the ability to hear from everyone in the community will give members a better sense of who is there and reading what they write.

Show Previews

The next challenge is to allow visitors to see portions of conversations so that they want to be involved and feel drawn to the conversations. A scared mom like me, or a patient, wouldn’t feel drawn to a community that they couldn’t, at the very least, see part of. Completely closing communities is not a great option. How can new users, who potentially need help, find you if they don’t see information that they relate to? Having the ability to show the community and the titles of the posts, along with a small amount of the post is a great way to draw people into the conversation.

To balance the security and openness that needs to be created, the ability to read the full posts, responses, and to engage should be closed to the public. You want to draw people into the conversation without providing the general public all of the information that your members may feel needs to be kept secure.


Providing online support in a meaningful and safe way can be difficult, but it is achievable with close monitoring, supervision, and technology. The ability to reach people when they need you, where they are, at any time, to offer that vital support is mission critical.


Photo source: jessicahtam

Andrea Baer
Andrea Baer is the Director of Patient Advocacy for Mended Hearts and Mended Little Hearts, which provides over 220,000 cardiovascular peer supports visits each year, along with educational and awareness programs. She manages their online support community. Andrea is also a heart mom of a son born with a congenital heart defect. You can follow her on twitter at @supermomwoacape.