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

February 22, 2015

This is the last post of 4 in preparation of the #hccmty flipped panel by Colleen Young, Community Strategist.

All 4 panelists will be presenting their ideas and sparking conversations on this blog so that the on-stage event at the February 25 #hccmty meetup will be but one more link in the chain, not the start or end point. Read the first blog by Colin Hung, the second blog by Blair Ryan and the third by Robyn Sussel

By Colleen Young (@colleen_young)

“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.” ~ posted by patient community member

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

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. So the community manager’s job, especially in the inception and establishment phases of the community life cyle[2] , is to

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

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

Read more about how self-disclosure conversations create stronger connections and deepen the sense of community among the members in the post I want my sex life back! TMI? Or gold for online communities and their managers?

Forget about a huge launch.[4]
A big launch may attract a lot of eyes to your online community. A bunch of people may even register. But if no one posts, all you have is a dead settlement – a gathering of people, akin to mayflies, who live but a day or two, and then they are gone forever.

The Mayfly metaphor was an a-ha moment during the flipped panel at Stanford Medicine X 2014. Watch from 23:03 to 26:15.

As Richard Millington says in his article 7 Things a Successful Online Community CAN Live Without, “The only element a community can’t survive without is activity. No activity, no community.

Flipping the #hccmty panel

Let’s get the conversation started before the #hccmty meetup on February 25.

How have you successfully generated activity on your community? What challenges have you had? I’d like to hear about those too. Add your thoughts in the blog comments or on Twitter using the hashtag #hccmty.

[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
 [4] Millington R. Big Launch Syndrome. Feverbee. Sep 2011
38 Comments leave one →
  1. February 22, 2015 10:20 am

    This is a terrific Blog on Community – the online relationships of people will die without a bit of nourishment. As in real life we need the knock on the door, the smile from over the fence, the simple hello or how is your day going.

    Online communities do this very thing through the magic of the Internet. This is happening because people like you Colleen, see the need for supporting those online who basically are searching for others who understand and can support.

    This is a new territory but a growing one. No longer are people isolated if they have a smart phone, a tablet or iPad, or laptop. The world of community is online through the dedication of community managers like you.

    I encourage everyone to view the #medx video in your blog. it is heartwarming to see how valuable online communities and forums are.

    Personally I have been touched by the people I connect with on
    “Going it alone” is no longer the way to view struggles, sickness, loss and grief.

    Community online enriches lives – if only you will let it.
    Thank you Colleen,

    Natrice Rese

    Liked by 2 people

  2. February 22, 2015 11:29 am

    Natrice – I love your metaphor comparing online interactions to the neighbourly in person equivalent — a knock on the door and a smile over the fence. It’s so true, especially in patient and caregiver communities.

    You play a vital role as a core community member on Virtual Hospice offering those virtual smiles and ensuring people don’t have to go it alone. Imagine a community without people like yourself and the other core members – people who have been there. It simply wouldn’t work. As in any healthy community there are “elders” and newcomers, and people inbetween – some leading the way, some looking for help and some offering it, while others simply listen with a kind response.

    Community managers also have to aware of asking too much of their core members. It’s a fine balance.

    I’ve enjoyed watching you on Virtual Hospice and on #hcsmca. To think that only a couple of years ago you were merely checking out this “Twitter-thing” and tentaively joined an #hcsmca chat. Since then you’ve moderated 2 chats, connected hundreds of people to people and a variety of Twitter communities, such as #hcldr, #hcsmph, #bioethics, #hpm, you represented the caregiver voice at an Ontario Hospital Association conference last month AND you are a Stanford MedicineX 2015 e-caregiver scholar!

    Yup – it’s a new frontier and you are an intrepid explorer. Thank you.

    Liked by 1 person

  3. February 22, 2015 1:38 pm

    I have successfully managed lots of community activity in my online community with one exception- maintaining professional interest. Parent/patient/caregivers are excited and fully engaged in discussing ideas for research, connecting with each other and really attempting to draw the research team into the conversations. Where we come up a little bit short is maintaining engagement of the professionals. This is a huge stumbling block for me. It seems as though we (as parents) are comfortable with the platform itself and with self disclosure/observations. I don’t sense the same level of comfort on the other side of the water – save for a few eager beavers. :) I am very much looking forward to the #hccmty stream to hear if others have experienced similar situations!

    Liked by 1 person

    • February 22, 2015 2:33 pm

      Nalanme, You raise a great point that begs further discussion at the #hccmty meetup. How do you encourage balanced participation from a variety of stakeholders?

      Let’s take a step back and first establish a definition of community. Here’s my favourite.

      An online community is a group of people who share a strong common interest, form relationships and interact online.

      Many of the most successful online communities are formed around a very niche group where the common interest is extremely strong, for example – a community for people raising rural or city chickens in their own backyard. Arguably this makes it easier to form relationship that help strengthen the commitment to the community. To quote McMillan and Chavis’ description of sense of community, this leads to the goals of individuals matching those of the membership as a whole. As members satisfy their own needs, they also meet the community’s needs.

      There are several successful online communities built for people within the traditional silos in health care, for example: cancer patients ( or physicians (

      However, increasingly in health care, people, organizations, hospitals, etc want to use an online space to traverse these silos and bring people together. In theory, this is admirable and I hope we can get there, but in practice it’s a huge challenge. Twitter communities such as #hcsmca, #hcldr, #bcsm, and many more have proven quite successful in this area. Researchers, healthcare professional, patients, caregivers, communicators, policy-makers, organizations and more participate in the chat in somewhat equal numbers.

      But the commitment to participating in longer form online communities has proven more challenging. In patient portals for example, patients and their families have “skin in the game” and are motivated to participate for their health and well being. Professionals need different motivators, such as reduction in workload or cast savings to the health care system, which in turn are paid out in a different compensation model. There are others who can speak to the intricacies of this better than I can.

      So, Nalanme, in your community of parents with special needs children and researchers who study them. What is the motivator for the researchers’ participation? How does community participation meet their goals and satisfy their needs, as well as nourish the community’s needs?

      I’d love to hear from anyone who manages or participates in an online community with multiple stakeholders. Anyone?

      Liked by 1 person

  4. Dorothy Klein permalink
    February 22, 2015 6:37 pm

    I am a mother of an adult son who had brain damage as a result of high school football. He is now in the mental health system and I have been his advocate for many years now. He lives in his own apartment in the same city as I do. He has a health team that visit him 2x daily 7 days a week. I have been VERY concerned about the lack of professionalism of the health care team and have used the proper processes to raise my concerns
    I am also a registered nurse. The health care team has major problems practising PATEINT CENTRED CARE.
    Health Care Professionals are very very insecure. They do not understand confidentiality and are afraid to share information for fear of “everything”. They do not know how to be a team – even within their own circles. they are afraid of their jobs and work to “support the system that employes them rather than the patient. they are still caught up in their own arrogance and “know it all” complexes. They form “teams” with no leader. They lack even basic communication skills and give mix messages to each other as well as to families and patients. Then they blame.
    It is not a funding problem but a system problem – yet they blame their poor “patient output” to lack of funding. Professionals are afraid to look at the systems they are using – because it will mean change for THEM.

    My experience has taught me to use the proper lines to bring the concerns forward even if it means “going to the top” – chairman of the Board of the hospital or the CEO of CCAC or whatever head person is responsible for the system. It is important to PROVE that you have brought the concerns to all the levels before going to the head person and that you have tried repeatedly to work constructively with them. This takes a great deal of patience and perseverence. Change only happens when community leaders PUSH professionals from behind and get “the ducks in a row” for the organizational leaders to send the message DOWN that the professionals have to change. Dot Klein

    Liked by 1 person

    • February 22, 2015 7:31 pm

      Welcome Dorothy, you have raised a plethora of issues and yes, patient-centred care is not (yet) the norm. While I cannot address everything you raise in this comment, I would like to focus on this statement where you say:

      “Health Care Professionals are very very insecure. They do not understand confidentiality and are afraid to share information for fear of “everything”.

      Privacy and confidentiality, while extremely important, are often used as a smoke screen in the online environment. Rather than weaving privacy mechanisms into online solutions by design, privacy is used as a barrier to innovation and progress in many instances.

      The healthcare professionals who are embracing social media today and have been doing so for years are the lead voyagers who can forge new ways of doing business. I also think that patients and patients families have been forging that path already. For many, sharing online trumps conventional concerns about privacy in health. The benefits they’ve experienced for improved health, better self-management and even in some cases, diagnosis, have given people the confidence and passion to pioneer a safer social web.

      How might we help the healthcare system overcome the fear of sharing and shape new boundaries where we can stop using privacy as an excuse?

      Liked by 1 person

  5. February 22, 2015 9:33 pm

    I also think there is a really interesting thread to pursue here in terms of how we get health providers more involved in online communities. I’m also interested in using digital tools to engage staff members of large health organizations. This is equally a hard sell, I think in part, for the same reasons — due to the culture of “fear” that has been drummed into healthcare practitioners about social media and privacy. It’s almost a culture of “better to do nothing” rather than really think through what’s a privacy risk and what is not. I’m curious to see what others have to say. See you all on Wednesday!

    Liked by 3 people

  6. February 23, 2015 6:39 am

    What a fantastic discussion Colleen! You always inspire me with how you challenge us to uncover deeper layers of thought. Your starting point is great content which sparks an even more interesting discussion via the comments. Some thoughts…. I absolutely agree that it is vital to nurture your community – it’s not enough to just provide content and leave. When people take the time to comment, particularly if they share something deeply personal, it’s so important to acknowledge their participation. This is how we start to build community. In fact I’d go so far as to say that as community managers we are morally obliged to acknowledge and respond to members and to nurture our community. I like Seth Godin’s description of a community as a “tribe connected to one another, connected to a leader, and connected to an idea”. This can’t happen without strong guidance and leadership.

    I see two types of health communities happening online – the first is focussed primarily on peer support (made up of patients and caregivers); the second is typified by communities like #hcsmca and #hcldr which I see as driven and sustained by discussions which are of relevance to a broader range of stakeholders. It’s the latter group which more easily attract researchers and healthcare professionals to participate.If online communities want more involvement from healthcare professionals, then a strategy needs to be put in place to interest them. I love the example of researcher Sarah Gilbert’s participation in #hcsmca recently. Building a community is an ongoing process. It can easily become stale and irrelevant if we don’t push ourselves to expand our activities and our reach further. Again, #hcsmca’ s visionary leadership constantly inspires me. Have a wonderful meet-up – I only wish I could be there with you in person!

    Liked by 2 people

    • February 23, 2015 10:48 pm

      What a great day of comments. I have a lot to catch up on, so let me get started.

      Marie, I think I’ll plan my next vacation to Ireland. I would love to make a huge pot of tea and have an uninterrupted chat about community, engagement and all the other things where we intersect.

      While we over-archingly share similar attitudes to online community there are a couple of points that you make where I have a nuanced viewpoint. For example, you said

      > “as community managers we are morally obliged to acknowledge and respond to members and to nurture our community

      Yes, to nurturing the community, but I would say that community managers are obliged to ensure no question or call for help go unanswered, but the response shouldn’t come from the paid community manager – sometimes yes, but generally no. When training moderating teams, I teach managers to ascribed to low-level community participation. Instead, I advise them to build a core group of community members that they can reach out to privately to respond to posts that don’t get a timely response.

      Now this may not hold true for someone like yourself who has made her blog into a successful community. You do share the experience and people want to connect with you. Not everyone can make a blog into a community. Kudos to you! I speak more of traditional message boards or forum based communities like Virtual Hospice, MacMillan Cancer Support, CancerConnection, Smart Patients or PatientsLikeMe.

      The one element missing from Seth Godin’s description, is: “form relationships” although perhaps it is implied in his understanding of connection. for me connecting is the beginning, but then it moves to building trust and forming relationships. My favourite definition of online community is “A group of people who share a strong common interest, form relationships and interact online.

      Dependancy on the connection to a leader can be problematic too. I have worked hard to democratize the sense of belonging in #hcsmca. One way is by having a variety of people moderate. The social network analysis of #hcsmca done by Anotoliy Gruzd and Caroline Haythornthwaite illustrated that our community does not revolve around one central person, but that the central connectors are shared by many. See figure 2 in this paper.

      You said:
      > “If online communities want more involvement from healthcare professionals, then a strategy needs to be put in place to interest them.


      Building community is an ongoing process and it is vital to evolve with it and push those boundaries. Having key members like yourself Marie makes that part fun and exciting!


  7. February 23, 2015 8:46 am

    Hi Colleen:

    Ahh, the mayfly metaphor…love, love, love it! Online communities need to be nurtured and allowed to grow and evolve…lots of care and feeding by a skilled moderator. You have led by example, Colleen. I am always in awe of how you gently draw in new visitors to a twitter chat. The act of moving from observer (lurker) to participant in an online community is one of stepping into vulnerability and takes great courage, to not be acknowledged or welcomed is as difficult in the online space as in a real life gathering. In a way, I view the role of community moderator as one of connector, like a wonderful hostess, knowing a bit about each of the guests’ stories to know who they might like to meet. Perhaps a blog post is in order for the care and feeding of an online community so it doesn’t end up like a pile of dead mayflies?

    Thanks for all you do to keep the conversation going, my friend :-)

    Liked by 1 person

    • February 23, 2015 10:51 pm

      Thank you Pam. It’s always such a joy when a lurker breaks their silence. I also delight when people bring their colleagues and friends into the chats.

      I should write that post and will. Thanks for the nudge.


  8. February 23, 2015 8:55 pm

    This conversation covers so many interesting, intriguing and skin-in-the-game thoughts and wisdom. In no particular order, here are some of my thoughts from Colleen’s post, and reflections from the comments of others…

    Our experience online at Quinte Pediatrics and Adolescent Medicine has several consistent patterns. Our resource posts — up-to-date info on medical topics — get many views. Our personal posts — pictures, peaks behind the scenes, artwork from patients, community events — get something different: comments and engagement. Both are important cornerstones of the community that has grown around us. I think the next step of growth, however, will rely on the skill Colleen talks about (and it is most definitely a skill), which is to introduce people to each other, direct them to relevant activity, and to be the community-connecting neighbour over the fence, as Colleen and Natrice describe so well.

    I hear also the reflections on professional engagement, or lack of engagement. While I certainly can’t speak for all in my profession, I do know from my own world, that some days it’s as simple as busy. Medicine is, at its core, one professional working with one person to recover health, or prevent illness. Although the model is evolving, crisis management (helping treat illness one-on-one) is still job-one in the way our current system happens. My best plans to carve out dedicated time on the schedule (#hcsmca Wednesdays at 1 pm, for example) are so very often thwarted by the patient we have to fit in, and very rarely do we turn to each other at the clinic after our extra patient has left and say “well, that could have waited”! The value of community? Enormous. I’d like to think of myself as a leader in recognizing that value and building online community. The place for community in our system? Still on the margins. Should it be? No, not at all. It just still is, and that’s one of the most critical limiters on the growth of professional engagement in online communities. I think our system, strained and badly in need of an affordable re-design, will need to understand the value of online communities in preventing illness and improving treatment outcomes. Then, online communities will truly explode with growth!

    Liked by 1 person

    • February 23, 2015 11:04 pm

      Great addition to this conversation Paul. It is so valuable to hear it straight from the doc rather than someone speaking on your profession’s behalf.

      Community management is a skill. Luckily there’s a growing body to literature to support the work of the practitioners of online community building. The social sciences and motivation theory underpin our work. As more and more research is done on health communities in particular, we’ll have even more guidance to set into practice. Community management isn’t just a cowboy act on the frontier. There are proven methods and best practices.

      Yes, you are a leader in recognizing that value and building online community. With leaders of your calibre, we will find the way to overcome the barriers and limiters.

      Liked by 1 person

  9. Shirley Williams permalink
    February 23, 2015 9:12 pm

    Nice post! Great tips. I am wondering whether there are any insights when you would dissolve a community? Is there a natural end?


    • February 23, 2015 11:12 pm

      Great question Shirley. If a community manager is tracking growth and activity as well as measuring the sense of community, the premature death of a community can be avoided before it starts its descent. However, sometimes there are circumstances that lead to the closing of a community – usually lack of funding to maintain it.

      My biggest pet peeve is when a community is established with time-limited funding (ie a research project) and then merely abandoned when the study is over or money runs out. The people or organization responsible for the community should foresee the end and prepare an adoption plan or a way to close the community with the community. Don’t just pull the plug.

      I write more about preparing for adoption in this paper: See the section “Mitosis, Adoption and Death” towards the end of the article.

      This sounds like another blog post in the making…I have so much more I could say and I have a great case study that Craig Thompson, Heather Sinardo and I worked on. We were sunsetting a bilingual and active online community for Canadian women with breast cancer (SharingStrength | FortesEnsemble) just as the Canadian Cancer Society was starting CancerConnection | ParlonsCancer. Our members were able to migrate to the new, improved platform, help seed the community and become community mentors. It was a fantastic win-win for all.

      Liked by 1 person

  10. February 23, 2015 10:25 pm

    Fantastic post Colleen…and an amazing thread of comments too. I agree 100% that communities need to be nurtured and that takes work. @DrPaulDempsey’s work at Quinte Pediatrics is an example of how it can be done “right”…but it requires constant effort. Unfortunately not many organizations seem willing to take this on. I believe that the WILL and DESIRE is there for professionals to get involved with social media and online communities but they simply do not have the time to dedicate to it. I have often wondered how many physicians, nurses and other professional caregivers watch/lurk via Twitter, Facebook and LinkedIn but do not participate (perhaps out of fear as Robyn mentions).

    I wonder if closed communities have more luck engaging professionals?

    Liked by 2 people

    • February 23, 2015 11:13 pm

      Colin: That is a good question for our fellow panelist Blair who is the CEO of the, a closed online community for physicians.


    • February 23, 2015 11:14 pm

      As a clinician interested in social media and patient engagement I wonder if the slow adoption of this form of interaction has also to do with the kind of training we receive. This week I was at my dentist and he told me that he saw me at his car dealer but did not want to approach me because he feels he is not supposed to approach patients in public. I guess that for some clinicians or researchers it feels a bit like this – suddenly you are exposed in the public, everyone will be able to read your ideas and opinions and we are only used to that direct and immediate one-to-one relationship with patients behind closed doors. Participating in a parents led group as a professional was an eye-opener to me but it really requires that guidance from a parent moderator to make me feel comfortable.

      Liked by 3 people

      • February 24, 2015 8:37 am

        Welcome Olaf! ‘Tis true. In the public space, patient-doctor encounters often play by different social rules. I used to run into my GP during my early morning jogs. Our routes crossed, so it was easy to smile, toss a greeting and continue on our ways in opposite directions. But, if we were going the same way, would we have run together for a distance and chatted as 2 joggers? Probably not. Why not? Probably for the reasons you state above.

        Luckily, there are patients, parents and medical professionals leading the way in the social web frontier. Find the leaders like Paul Dempsey. I highly recommend following Bryan Vartabedian @Doctor_V. He offers great guidance for the public physician on his blog and his ebook The Public Physician. Emulate the attitudes that suit you and keep up the great work listening, learning and doing it! So grateful that you posted here.

        Liked by 1 person

  11. February 24, 2015 1:22 am

    Wow – a great post is shown by the conversation it generates. So many interesting points brought up here. One that I’d like to delve into is the idea that on the health care practitioner side one barrier to being involved with an online community is that of time. I see this as a bit of a false argument. I can’t see that a doctor or any health care practitioner has any more limited time than a parent looking after a child with a chronic illness and working full time or a person self-managing disease and the day-to-day trappings of life. Rather, I would suspect that when the health care practitioner has begun lessons learned and the connections gleaned through that online community, then the time will be made to make it part of their daily or weekly practice – much like those of us who are already doing that (all of us that have already commented!). The trick will be in translating that value from the ‘early adopters’ who are already here to those who haven’t learned the value of these mingled online communities.

    Again, amazing comments already. This is a great thread.

    Liked by 3 people

    • February 24, 2015 7:33 am

      Completely agree! There is no such thing as “no time” – only priorities.


    • February 24, 2015 8:40 am

      Bam Isabel! You hit it bang on. “The trick will be in translating that value from the ‘early adopters’ who are already here to those who haven’t learned the value of these mingled online communities.

      How might we help that translation?

      Liked by 1 person

      • February 24, 2015 10:36 am

        I think that it is important to recognize that parents/caregivers/patients have a slightly narrowed scope of interest (for all the right reasons!) for engaging- it’s for the interest of one person, one family, one community, with the hope that it will impact many. On the professional/practitioner side, the scope needs to be much wider- (again, for all the right reasons!) and must focus on the interest of many. As a parent/caregiver I engage in SoMe for many reasons, and I really do respect that my interest will absolutely be more intense than most practitioners. There is balance that needs to met, without shaming, nor asking for too much.
        Translating the value to the prof/pract crowd is not nearly as simple as it sounds- but I believe that acknowledging and respecting the differences mentioned above is a positive place to start.

        ~~”Alone, we go faster. Together we go further.”~~

        Liked by 2 people

    • February 24, 2015 9:53 am

      I would say that Isabel has thrown down the gauntlet to busy health providers. Who is busier than a parent with a sick child? It’s not about time, it’s about motivation and some of the other things mentioned here – training, culture, fear …

      Liked by 3 people

      • February 24, 2015 10:18 am

        Robyn, I think you & others really hit with the ‘culture & fear’ as powerful ‘de-motivators’. I know that when I hold back from doing things, that’s what often keeps me from doing things. ‘We don’t do it that way,’ ‘No-one else is doing it,’ ‘What would the community think,’ ‘What if I make a mistake.’ And, to be completely honest about myself, ‘What if I make a mistake, in public.’ And what’s more public than online.

        In general, we (by we I mean people, and especially high achieving people) are not very forgiving about our own mistakes. I’m not a doctor, but I imagine medical training reinforces that. Then here comes this social media community saying, ‘It’s ok, let’s learn together!’ There is likely some serious cultural bias and fear going against that!

        Do we need to go back to MedEd to talk abou the value of communication? The value of owning mistakes and openness? I think so. I think we’d have a different medical community.

        Liked by 2 people

      • February 24, 2015 10:36 am

        I think communications issues during medical school is really lacking. But do you really want your cardiac surgeon to have an attitude of “let’s learn together” ? I don’t!! It’s a really difficult discussion that I don’t think we’ll solve easily. I’m interested to hear what the attendees tomorrow think of this issue. I’m sure they will have more answers than the panel. Looking forward to that!

        Liked by 1 person

  12. February 24, 2015 11:45 am

    Excellent article, Colleen. There are many barriers to participation, and perhaps the largest one is that many (who do not tweet during work) view participation on social media as wasting time – “it doesn’t make me money, so why do it rather than any other form of entertainment?”

    We seem to have the opposite issue, too. Because we are first and foremost a business (as opposed to a healthcare social media crew, epatient, or healthcare worker like much of hcsmca) we get the impression that many on Twitter avoid us for that reason – “they’re only here to make money.” If Twitter could pay our paycheques, we swear we’d tell you how! We’re actually (sincerely, honestly, etc) here for discussion and two-way communication, believe it or not. We’ve learned a ton from many in various Twitter communities and hope to continue to do so. We also hope we’ve taught quite a bit, too.

    Then there’s controversies, which is why (we think) people from several hospitals don’t speak with us very much any more. It’s astounding how “just install some infection prevention signs” is considered a controversial stance, but that’s the standard here in Canada – don’t rock the boat. Having this in the background of conversations with these healthcare orgs can often make things tense – they can often be paralyzed through bureaucracy into communicating nothing but shallow corporate communications. It doesn’t seem two-way.

    But to return to the first point, as this company is just two of us we do have times when we get caught up in work (both infection control related and managing sign projects) and can’t participate in this community as much as we’d like to. Keep rocking that boat, though!

    -Brendan and Rosemary at Tagg Design from Toronto

    Liked by 1 person

  13. February 25, 2015 12:11 am

    Sometimes I’m a mayfly. I’ve joined communities and quickly decide there’s nothing there for me. And even on Twitter, you wonder what happened to all of those people who haven’t posted for 6 months?
    Sure you can make mistakes in public on social media – trouble is they remain there indefinitely, while no one in the restaurant remembers or cares that you dropped your soup on yourself.
    When Jenn says that caregivers/patients often have a narrower scope of interest I wonder. It seems to me that as they are exposed to new people and new ways to influence the conversations, that they go on to stretch themselves beyond their original boundaries.

    Maybe social media is the new “choose your own adventure”

    Liked by 1 person

  14. February 25, 2015 6:55 am

    Colleen, What a terrific post!. And the timing is perfect for me as i will be talking to a number of patient organizations next week about SoMe, trying to steer them away from focusing first on ‘technology and shiny new objects’, instead of members’ needs and expectations. Big thanks.

    Liked by 2 people

  15. February 25, 2015 1:34 pm

    What a wealth of great comments (i.e. engagement!). I didn’t figure out how to officially “like” what you all said – but I do like it and appreciate everyone taking time to share. Getting people to comment on blogs is generally hard. Colleen embodies all the best community builder/sustainer traits.

    What works in generating community activity? Be authentic. Be transparent. Treat people well and with respect. Be welcoming and always mindful of newcomers and their viewpoint. :)

    Over in the #gyncsm community for gynecologic cancers, one of our early guiding principals (aside from explicitly defining our goal as to be a community) was to have a mix of participants which would including both gyn oncologists and patients. The diversity of our participants has gone well beyond that to include researchers, genetic pre-disposition advocates, genetic counselors, nurses and loved ones. We work hard to gear our discussions around the two-fold goal of providing reliable information and support AND providing health care professionals with insight into the patient experience. We built healthcare moderators into the model to ensure that side and have had success with getting practitioner involvement. Patients and loved ones have ended up being harder to attract and then keep involved. Our healthcare folks seem more comfortable in the public space and patients/families are maybe more comfortable in closed patient communities. We are partnered with Smart Patients to try and provide a more private space to extend the community, but have not seen many “make the jump”. Still working on that aspect. We are dealing with a limited patient population and then an even more limited amount of those folks who are on twitter.

    Speaking of Smart Patients, they are committed to being a patient and loved one platform and are working out how to engage their community with physicians/professionals. They are going the route of a companion community for physicians with carefully thought out points of interaction. To me they are a group fascinating to watch as they really do ask for community input at every turning point and added feature/service.

    Hear, hear to starting small and working to have quality, then scaling up (vs. a big splashy launch). Five engaged community members are so much more valuable than a bunch of mostly absent ones.

    I’m just heading into the journey of working on building community for a for-profit (vs. nonprofit) so I appreciate the comments by Tagg.

    Thoughts on getting more professionals involved in a closed on-line community… Find out who are the key influencers in that group and convince them to get involved if they aren’t already. Poll your professionals to glean some tangible benefits they are getting. If aren’t many, figure out what their needs are. If there are several, put them together in a way easy for engaged members to promote to others. As others mentioned, I too would love to see more discussions on how we get health providers more involved in online communities.

    My brain is still churning but I have to go eat lunch and be on a panel – I’m all about community management today! I might just sneak back into this comment thread later.

    Liked by 2 people


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