In a 2011 study* it was found few patients end up participating in organized support groups. ~10% go to face-to-face groups and 4% go online.
However, more than 50% of patients do contact a peer they know. They have a slightly positive attitude toward being in a support group, with the advantage being “sharing experiences” and “finding recognition.”
How might one increase participation, in particular with online support? The study discusses some possibilities.
The study looked for reasons why patients found it difficult to participate in online support and also discussed how one may intervene the top four were-
Unable to find a suitable support group.
The study suggests that education and assistance to patients can help them find the group they are looking for. As a Community Manager, it is important to not only include good SEO, but to have solid descriptions of what your group is about. One might consider reaching out to provider organizations as well.
Not wanting to talk about their illness on the Internet.
The study does a great job by suggesting one encourage patients to lurk in a group, as well as educate people on what happens in a group and what a particular group is about. Using a buddy system for new members was also recommended
The illness itself and Finding time.
To minimize the effort required to participate, it may be helpful to offer easy, push type, ways to interact with the community.
Great to see this sort of research being done, as with other papers, this one includes numerous citations to follow up on. There were a number of limitations to the study, including the age of participants, so you would want to check into the study itself.
* Determinants of Engagement in Face-to-Face and Online Patient Support Groups C Van Uden-Kraan, et al J Med Internet Res. 2011