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April 27th, 2016

“Is anyone there?” Is your online community a ghost town?

By Colleen Young, Connect Director

“Well it’s discouraging to find that after three months and 126 views of my post, not a single person made the effort to write a single supportive word.” ~ from a member of an online cancer community

What a heart-wrenching post to see on an online patient forum! Nothing spells the demise of a community more clearly than unanswered posts and lack of activity. If you want to build a thriving community, focus on the people, help them connect and get them talking. To be successful, a community needs activity.

Forget about producing content.

Instead, foster connections between members and stimulate conversations.[1]

People seek community online to connect with other people. They want to learn from other people like them, put the information into context of the experience, share what they know and have discovered, ask questions, find support, collaborate and problem-solve.

Information seekers scour the web. Lurkers read community posts. But when someone actually posts to an online community, then they want to talk. They want to connect and  interact. So the community manager’s job, especially in the inception and establishment phases of the community life cycle[2] , is to

Colleen Young

Colleen Young, Community Director, Mayo Clinic Connect

  • Make sure posts get a response
  • Introduce people, especially first-time posters, to other members
  • Direct people to relevant activity and topics they are interested in

Community managers do a lot of this work behind the scenes. We build relationships with core members[3], who help respond to new members, generate conversations and model community etiquette and behavior. For patient and caregiver communities, this means making a safe space that welcomes open and frank discussions.

Cindy Elliott, Senior Marketing Specialist, Mayo Clinic

Cindy Elliott, Senior Marketing Specialist, Mayo Clinic

At the Mayo Clinic Social Media Network Member Meeting on May 18, Cynthia Elliott and I will showcase Mayo Clinic Connect and how strategic community management practices helped this online patient community go from being a ghost town to a bustling community.

Help shape our presentation and ask your online community questions here. What challenges have you had creating activity in your online community?

Editor's Note: Learn more about how you can attend this case study at the #MCSMN Member Meeting!

References
  1. Millington R. Information Needs and Why Content-Driven Community Strategies Are Flawed. Feverbee. Oct 2011
  2. Iriberri A, Leroy G. A life-cycle perspective on online community success. ACM Comput. Surv 2009 Feb 2009;41(2):1-29.
  3. Young C. Community management that works: how to build and sustain a thriving online health community. J Med Internet Res 2013;15(6):e119

Tags: #MCSMN, Colleen Young, Cynthia Elliott, Events, member meeting, Online community

Liked by Shigeo Uehara, Bob West, Susan Woolner, Janet Kennedy

Comment


Janet Kennedy
@jkennedy93

Posts: 263
Joined: Feb 12, 2014
Posted by @jkennedy93, Apr 27, 2016

Excellent post, @colleenyoung – My experience is not within patient communities but professional communities and it’s much the same there. I think there are folks who will search the group for a similar answer in a professional community and be satisfied with the result. However, patients who join a community are being vulnerable and need support and reinforcement.

Questions:
How important is it who the feedback/support comes from? Do community members expect responses from the moderators/community owners or is an answer from another member just as good?

You mention supporting first timers but what about lapsed or long-time silent members? Would you suggest calling them out to engage them?

Posted by @colleenyoung, Apr 27, 2016

Thanks @jkennedy93
You’re absolutely right; many of the principles of community building apply to all types of communities. However, there are nuanced differences in member motivations between a community of practice (like MCSMN) and a community of circumstance (like Mayo Clinic Connect or other patient community). It’s important to understand the member motivators to build membership and to sustain conversation. Regardless of whether someone has posted for support through illness or wanting to improve the practice of their trade, they are looking for connection.

Good questions.
1. A well-structured community does not have have a single central holder of knowledge, but rather many strong ties and circles of trust. By this I mean that no one (moderators and owners included) carries the power (or burden) of authority. It’s not a classroom model where the teacher holds all the knowledge, but rather a model where the collective knowledge reigns supreme. The diagram attached shows a social network analysis of #hcsmca. The researchers’ analysis showed there was “no preferential attachment among people in the same professional group, indicating that the formation of connections among community members was not constrained by professional status.”

2. Indeed, nurturing a community that is sustainable means focusing equals parts on retention and growth (new members). I concentrate on keeping active members or recently lapsed active members. The return rate of long-lapsed members, especially those who were never very active, is too low to warrant the effort. Better to concentrate on the members you’ve got and make the experience even better for them.


Kimberly Dorris
@KimberlyGDATF

Posts: 123
Joined: Jan 02, 2014
Posted by @KimberlyGDATF, Apr 28, 2016

A few comments…

First, I have found that overall participation in the GDATF’s online support forum is WAY down over the last couple of years. Part of it was that we went through a period where there were a lot of contentious posters (who have since left – or in a couple of cases, banned). But I also think that part of it is that people are moving to Facebook groups.

When we were going through that bad time, I lost ALL of my facilitators and was unable to find new ones. No one wanted to be the “bad guy” – nor become a target for abuse. However, I now have a category of users called “Warriors” who do not have facilitator responsibilities, but their names are designated in orange to show that they are long-time participants.

Whenever there is a new post (especially for a brand new member), I make sure that I respond if one of our “Warriors” does not.

I would actually love to remove the “views” from our page, as it can be very discouraging for posters. For whatever reason, there are a LOT of people who read our posts, but few who respond. One recent thread has just 7 replies with 237 views. One of our most popular threads has over 48,000 views – with only 261 replies. Participants do have to register with an e-mail address, which might keep some people from posting…but we’ve had way too much trouble from spammers to just allow people to make comments openly.


Dan Hinmon, MCSMN Director
@DanHinmon

Posts: 2040
Joined: Apr 13, 2011
Posted by @DanHinmon, Apr 28, 2016

Contentious posters are tough, @KimberlyGDATF. Sounds like you had to ride that storm. Besides banning a few, how did you manage the others? The idea that people may have left for Facebook groups is so interesting. What indications do you have that that is where people are going?

I wouldn’t feel too discouraged about your views vs. replies. It is the nature of almost all online communities that 1-10% engage with comments. Discussions are certainly the lifeblood of communities, but those 237 who view the 7 replies are hopefully learning a lot.


Kimberly Dorris
@KimberlyGDATF

Posts: 123
Joined: Jan 02, 2014
Posted by @KimberlyGDATF, Apr 28, 2016

Hi Dan – When I started moderating the GDATF’s forum in 2010, I was reluctant to ban anyone. There is a patient who had an active group on Yahoo (now on Facebook) who claimed that she had been unfairly banned from our forum over a decade ago, and this individual has since spread a LOT of negative information about our organization. I had hoped that I could prevent this from happening with someone else in the future by allowing the discussion to flow freely.

However, when the contentious posts started costing us members – and facilitators – I put a set of guidelines in place. Members now must click to accept the guidelines before making their first post and then again every 90 days thereafter. Since members are made aware of the guidelines up front, I would have NO reservations about giving someone a single warning and then following up with a ban or suspension for a repeat violation. And fortunately, since we put the guidelines in place in 2013, I haven’t had to do that!

I don’t have any hard data on users migrating to FB, but I used to be a member of a couple of Facebook groups (which I have since exited from), and as I saw our activity declining, the number of participants in those FB groups was ramping up exponentially.

I’m not personally too worried about the views vs. posts, but this *can* be distressing to members (especially new ones) to see the discrepancy between views and actual replies when they post a question. I actually see a lot of comments like the one that @colleenyoung included at the beginning of her posts.

I’ve included our guidelines below along with a sample of a thread that got way out of control before the guidelines were implemented. I don’t think I’m out of school by sharing, as this is a public forum. (One of the individuals involved later threatened to sue us, and I actually felt we were in a better position to leave the post up rather than take it down).

GDATF Guidelines:

http://gdatf.org/forum/topic/43571/

Example of a Thread *Before* Guidelines:

http://gdatf.org/forum/topic/43554/


Dan Hinmon, MCSMN Director
@DanHinmon

Posts: 2040
Joined: Apr 13, 2011
Posted by @DanHinmon, Apr 28, 2016

Such good guidelines, @KimberlyGDATF. Sounds like they’re making it a better experience for everyone. If your activity has dropped because all the people who wanted to give bad medical advice or criticize doctors or hospitals have gone off to another forum, good for you! There is only so much grief we should put up with in life. What platform are you using for your community? If members are concerned about the views/comments ratio, can you turn off views?


Kimberly Dorris
@KimberlyGDATF

Posts: 123
Joined: Jan 02, 2014
Posted by @KimberlyGDATF, Apr 28, 2016

Hello – We had a third party tech person design our website and forum using a framework called Django. I’m not enough of a techie to understand the specifics! Turning off views would be a good idea if possible, although I’m sure we would have to pay to make this change.


Dan Hinmon, MCSMN Director
@DanHinmon

Posts: 2040
Joined: Apr 13, 2011
Posted by @DanHinmon, Apr 29, 2016

Good to know about Django, @KimberlyGDATF. Thanks for sharing.

Posted by @colleenyoung, May 2, 2016

Hi @KimberlyGDATF. So many great points in your comments.

1. Guidelines – Really like the solution that you put in place. Having guidelines makes it much easier to reign in behavior that is not within the community charter. It sounds like you were dealing with some particularly tough issues. Often times, “misbehavior” is unintentional and can be used as a learning moment to guide the membership about the community norms. It’s obvious to see that your community is mature (as in community’s lifecycle) to have developed community norms by example, but it is extremely useful to have articulated these in one place. Kudos. I’ve written a blog about this here: https://cyhealthcommunications.wordpress.com/2013/09/20/how-do-you-manage-misbehavior-in-online-health-communities/

2. Views, zero responses, categories – have you asked Django about removing the view column? It may be a simple toggle on/off. (At least I think it should be).
While I understand keeping the stickly closed posts at the top to help initiate newcomers, the first 8 threads having 0 or few replies might be off-putting. Can you create categories within your platform?


Kimberly Dorris
@KimberlyGDATF

Posts: 123
Joined: Jan 02, 2014
Posted by @KimberlyGDATF, May 2, 2016

Hi Colleen – Thanks for sharing your blog post! Interesting idea about people being put off that the initial announcements don’t have replies. I specifically closed those threads, as people were sometimes grabbing on to one of those threads to make their first post – even though it was off-topic. Collapsing them into a single folder would be a good idea. ONe of my challenges is that we use an outside tech person who is frankly overcommitted with other projects, so I kind of have to pick my battles when it comes to getting tech issues addressed!

Posted by @colleenyoung, May 2, 2016

Are your community members leaving to go to Facebook? Good for them. Good for you.

Kimberley, I see the Facebook migration happening on Mayo Clinic Connect as well. In fact, members will often recommend a variety of other patient forums to Connect members. I embrace it. Many of our members straddle several communities. Some have invited me to their alternate groups.

Sure, sometimes members outright abandon or significantly decrease their participation in Connect. However many others help feed the cross-pollination. In one specific Fb group about hypertrophic cardiomyopathy (HCM), members have helped develop several informative threads on Connect and I consulted with them on Fb to help develop our upcoming webinar content specific to HCM.

Ultimately getting patients connected with other patients is the primary goal. If I can help facilitate a good connection on Connect or elsewhere, they’ll remember that. For example, now that I know about GDATF, I’ll be sure to recommend it should a conversation burgeon on Connect about Graves’ disease. I would love to explore how Connect and GDATF could help each grow stronger. (I’ll PM you.)

I always try to stay informed of good patient communities, and get to know the leaders and moderators of the other groups. I firmly believe each community provides something unique, and if not, then it is time to re-examine the domain and purpose of the community, and consider the future value proposition.


Kimberly Dorris
@KimberlyGDATF

Posts: 123
Joined: Jan 02, 2014
Posted by @KimberlyGDATF, May 2, 2016

Our Board is very sticky on only giving out evidence-based information, so we are not in touch with most of the other patient groups out there (with the exception of a couple of thyroid cancer groups that we do refer people to – ThyCa and Light of Life). I completely understand our Board’s concerns, but the down side is that we sometimes do lose people because they want more of an open discussion on alternative/complementary therapies.

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