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Health care professionals, patients, caregivers, family, friends, and other supporters are increasingly joining online health communities to share information and find support. But social Web (Web 2.0) technology alone does not create a successful online community. Building and sustaining a successful community requires an enabler and strategic community management. Community management is more than moderation. The developmental life cycle of a community has four stages: inception, establishment, maturity, and mitosis. Each stage presents distinct characteristics and management needs. This paper describes the community management strategies, resources, and expertise needed to build and maintain a thriving online health community; introduces some of the challenges; and provides a guide for health organizations considering this undertaking. The paper draws on insights from an ongoing study and observation of online communities as well as experience managing and consulting a variety of online health communities. Discussion includes effective community building practices relevant to each stage, such as outreach and relationship building, data collection, content creation, and other proven techniques that ensure the survival and steady growth of an online health community.
In her keynote address to participants of Medicine 2.0’11, Susannah Fox pointed out that “Patients and caregivers know things–about themselves, about each other, about treatments - and they want to share what they know to help other people” [
Recognizing the potential benefits and increasing popularity of online patient support [
This paper describes the community management strategies, resources, and expertise needed to build and maintain a thriving online health community; introduces some of the challenges; and provides a guide for health organizations considering this undertaking. The tutorial draws on insights from an ongoing study and observation of online communities as well as experience managing and consulting a variety of online health communities (see
Online communities built and used in this research.
Community | Description |
|
Date of inception | Number of membersa | Stage |
SharingStrength/ |
A Canadian online resource library and community for women with breast cancer |
|
Mar. 2007 | 1050 | Mitosis (archived & adopted) |
Health Care Social Media Canada [ |
A community of practice for people interested in exploring social innovation in health care |
|
Sept. 2010 | 6564 | Maturity |
CancerConnection/ |
Canadian Cancer Society’s online community for people touched by cancer (H. Sinardo community manager) |
|
Jan. 2011 | 2100 | Establishment |
Canadian Virtual Hospice/ Portail canadien en soins palliatifs [ |
Online resources and community for people living with limited time, losing someone, caring for someone, or working through grief |
|
Dec. 2011 | 477 | Late Inception |
aMembership numbers as of Feb. 28, 2013.
At the time of writing this paper, the author (CY) manages the online communities of Health Care Social Media Canada (hcsmca) [
Virtual Hospice’s online community was first introduced in 2004, but after the initial launch, the discussion forums languished with little to no activity. In 2011, the author joined Virtual Hospice’s team to develop and implement a strategic online community management plan and establish a successful community. Today, the fledgling, but active, community continues to grow, providing peer-to-peer support and information for a very specific point in the health continuum, namely for people living with life-threatening disease, for friends and family who care about and for them, and for people dealing with grief and loss (see
SharingStrength/FortesEnsemble was a Canadian online resource library and community for women with breast cancer. The website was archived in 2011 [
Throughout the paper, the term “online community” is used; some researchers use “‘virtual community”. While the terms are interchangeable, online community is more widely used [
Virtual Hospice forum activity (captured April 2, 2013).
As yet, there is no universally accepted definition of online community. Howard Rheingold, who coined the phrase virtual community, describes them as “cultural aggregations that emerge when enough people bump into each other often enough in cyberspace” [
share strong common interest = domain
form relationships = sense of community
interact online = activity
There are different types of online communities [
Some online health communities thrive, sustaining activity for many years. Others languish, resembling ghost towns [
The success or failure of an online community depends, in part, on an organization’s commitment to sustained organizational and financial support for dedicated community management. Many health organizations are most concerned about the proliferation of misinformation [
To build a thriving online community, organizations must ensure they have organizational commitment and the financial and human resources to not only start an online community, but also to support its growth and to evolve with the community throughout its life cycle. There are many flourishing online health communities. Before deciding whether to start an online community, resource-strapped health organizations should perform an environmental scan and consider whether their proposed community differs from those that exist or whether it makes more sense to seek collaborative opportunities with an established community. Investment in community management is imperative to an online community’s success [
establish and understand the domain of the proposed community [
develop and sustain a community management strategy according to the community’s life cycle stage [
foster a sense of community [
The
An online community’s purpose and membership motivation also help determine which management strategies and platform tools will most likely contribute to its success [
Reviewing online community research, Iriberri and Leroy recognized that online communities evolve through distinctive life cycle stages: inception, creation, growth, maturity, and, sometimes, death [
Successful communities possess a strong sense of community, which comprises four elements [
Membership: Individuals have a feeling of belonging to, and identify with, the community.
Integration and fulfilment of needs: The goals of individuals match those of the membership as a whole. As members satisfy their own needs, they also meet the community’s needs.
Influence: Members feel they matter within the community and that they can influence and be influenced by the community.
Attachment: Members share an emotional connection. Members believe they share or will share common history, places, or experiences.
Historically, measures of the sense of community in online communities have been adapted from McMillan and Chavis’s widely used measure of sense of community for face-to-face communities [
While similarities exist between the sense of community of face-to-face and online communities, there are significant differences [
Depending on a community’s developmental phase, its community management goals, strategies, priorities, and basic tasks will evolve.
Understanding a community’s life cycle stage by monitoring its growth and activity (ie, posts, chats, events, and private messages) will help community managers decide when to adjust their community tactics and what changes the community would welcome and will enable them to substantiate the proposed evolutions for stakeholders. A community’s life cycle is not linear and managing its growth, activity, and design is an iterative process that must adapt to the needs of the members and the community’s purpose.
Life cycle of an online community (by Richard Millington).
The inception stage of an online community begins as soon as an organization begins to engage potential community members [
develops relationships with potential members
invites them to join and participate and encourages them to remain active
helps establish tone and style
recruits and nurtures an active core group to be community ambassadors
At the beginning of the inception stage, most of a community manager’s time is dedicated to making connections and building a core group of active members. This work should start even before the community platform is available. Community managers seek potential members by tapping into their personal and professional networks and their organization’s networks, monitoring discussions on social media, and recruiting volunteer participants. In other words, online community building starts with many one-on-one interactions, many of which occur offline. As Millington points out, “Getting your first 50 members is really hard work. It’s much harder than you probably imagine. In fact, earning those first 50 people is a full-time job” [
Many health organizations have a volunteer corps. Volunteers can be recruited and offered training on how to use the community platform and how to foster supportive conversation online (see
Engaged volunteers welcome new members and ensure they receive timely—ideally immediate—replies. Reducing the time between posting a message and receiving a response encourages new people to stay engaged with the community members and to become committed members [
Core members, including volunteers, play a vital role in the success of a community. They provide activity, but they also establish the tone of the conversation, welcome newcomers, connect people in the community, give lurkers (people who read but do not post) the confidence to join the conversation, and invite people to the community. Core members also help make improvements to the community, such as identifying possible barriers to participation and usability problems. In the inception stage, all new members are potential core members. Community managers have the opportunity to demonstrate to early adopters that they matter and that they have influence; managers should also ensure that there are channels for members to give their feedback. In the beginning, many members join because of a direct invitation. Beyond asking them to join, community managers should guide new members as to what they can do, for example, respond to a particular thread, start a blog on a given topic, add to the profile page, etc.
During the inception stage, slow, steady growth is best. Successful community managers integrate a few members at a time and work at converting visitors into active members. Thus the goal is not to accrue a large number of registrants, but rather to steadily grow the number of members who are committed to participating [
observe behaviors and make adjustments to usability, design, and strategy according to member feedback and behavior
look for on- and offline event opportunities, such as live chats or in-person meetings
increase activity and nurture a sense of community
moderate posts and remove or correct misinformation
As membership and activity grow, community management strategies will gradually shift to establishment-stage activities.
Screenshot from Tudiabetes (they created a group for volunteers, who ensure new members are welcomed).
The establishment phase of the community’s life cycle begins when members generate more than 50% of the activity and ends when they generate most (90%) of the growth and activity and when the sense of community starts to develop [
adding, nurturing, and supporting core members
increasing activity with an eye to deepening the sense of community
continuing with the growth strategy and broadening outreach
expanding community tools
Activity remains the prime focus of the establishment phase. Supporting, observing, and investing time in the community’s core members helps achieve the remaining goals of the establishment period, namely growth and a deepening sense of community [
As their commitment deepens, core members become more invested in the community’s success. The community manager can encourage further organic growth by developing a word-of-mouth referral plan, leveraging the commitment of these community ambassadors [
increase their status within the community
increase their status outside the community
help others in a similar situation
help build the community
The first two motivations can be satisfied by recognizing key members and their contributions as mentioned above. For the latter two, the community manager can implement mechanisms that cater to the “pay it forward” sentiment that is prevalent among patients and caregivers and is a key motivator for health communities. Online community members often have offline interactions with other patients and caregivers, health care providers, and support organizations. These interactions can be fertile ground for promoting the community and its benefits and for extending invitations to join. Community managers should encourage and facilitate these opportunities.
While direct invitations to join the community continue, the community manager’s outreach efforts can shift to include broader awareness tactics at this stage, such as writing about the community (submitting articles to relevant newsletters and posting to social media channels and related blogs) and making presentations at relevant conferences and events.
Creating content for and about the community intensifies the sense of community. Content examples include producing a community newsletter or community section in the organization’s existing newsletter, writing newsletter articles or blog posts about individual core members or inviting them to make a newsletter or blog contribution, or producing a video featuring the community and its membership.
New members and new activity bring new ideas for discussions, for new roles and responsibilities, and for the development of new tools, features, and technologies. Thus, during the establishment phase, the community manager also continues to
moderate posts
monitor growth and activity
make usability, design, and strategy improvements according to member feedback and user behavior data
create event opportunities
Gradually, the community will evolve to the maturity phase.
Profile of a member who has achieved mentor status on PatientsLikeMe site.
An online community’s maturity stage begins when more than 90% of activity and growth are generated by members [
training core members to assume roles to maintain activity
stimulating referrals and promoting the community to new members
intensifying the sense of community
assessing and optimizing processes
developing collective value
The community manager should monitor the community and identify opportunities to develop collective value, which in turn intensifies the sense of community and will help promote the community. Collective value can be developed through co-creation, that is, involving community members to produce something together, such as a community charter or an e-book about the community or on a subject that represents the collective’s area of expertise. Members could be asked to write content for third-party publications or to respond to a survey to gather feedback on proposed improvements, giving them ownership of the changes. In the case of hcsmca, which is a mature community, members have been invited to become more involved, and some have taken initiative to create new roles and participation in co-creation of documentation and activities, for example:
moderating weekly online chats
organizing in-person meetings (meet-ups)
writing blog posts about their experience in the community or about community activities
analyzing the community (see
creating documentation (eg, archiving of chat transcripts)
Many communities remain in the maturity stage for years and, if they maintain sustainable member size, may never reach mitosis or death [
Infographic created by a hcsmca community member about the community.
The mitosis phase begins when the community becomes largely self-sustaining and ends when activity and growth start to erode the sense of community [
With proper monitoring and data collection during the establishment and maturity phases, however, the community manager will observe special interest groups emerging and will be able to create splinter groups or community subsets [
Each splinter community will return to the inception phase and progress through the life cycle. Because the community management efforts for each splinter community equal the effort of starting a new online community, initiating one splinter group at a time is advised [
Millington’s adapted version of Iriberri and Leroy’s online community cycle appears most applicable. It is practical and quite comprehensive; however, “Adoption” should be added to the life cycle for organizations that can no longer fund or otherwise support their thriving online community. Sometimes burgeoning or thriving online communities are forced to die a premature death when funding priorities shift or dry up despite the success of the community. In such cases, planned adoption can support the survival of the community of people. SharingStrength/FortesEnsemble is one example of successful adoption of a community when the funder’s priorities were redirected [
Like Iriberri and Leroy, Millington refers to the possibility of the final life stage: death. Understandably, however, his practice guidelines do not focus on this stage because he contends that good community management practices render this stage avoidable [
Metrics for quantifying the success of online communities vary widely [
One can also apply many useful health-related metrics, such as self-efficacy and quality of life, to analyze online communities. For the purpose of this paper, the focus is on metrics specifically pertinent to the community manager’s role in developing a thriving online community. This role includes ascertaining the community’s needs and identifying relevant community trends and developments to steward the health of the online community—its growth, activity, and sense of community—and to foresee and fix negative trends before they become problems. Thus, it is important to monitor the trends and to gather data that will
keep track of the growth of the community
demonstrate activity and engagement (sociability)
improve the community, discover problems, and validate what works (sociability and usability)
report progress and demonstrate the value of the community to stakeholders, including community members
Community managers should collect a manageable amount of data regularly, consistently, and accurately over the life of their community. Millington recommends tracking active members to determine growth and engagement [
Activity and engagement data help determine where the community is in its life cycle (a more engaged community equals a more developed community) and identifies potential problems early, when they can be more easily corrected. Activity and engagement can be assessed by monthly tracking of the number of posts, the average number of contributions per active member, the average number of responses to a post, the average time for a post to receive a response, and the average number of visits per active member [
Examples of growth and activity data that community managers could collect.
Measurement (monthly) | Key questions |
Number of first-time visitorsa to community | Are people finding the community? What outreach tactics can be used, or technology optimizations made, to increase the number of visits? |
Number of new members (registrantsb) | What is the conversion rate from visitor to member? Is there a usability barrier to registration? Is the platform optimized to motivate visitors to become members? Are outreach tactics attracting the kind of people suited to the community? |
Number (or percentage) of active membersc who made a contribution (post) | What is the conversion rate from registrant to active member? What motivates people to participate (high conversion rate)? Why are people motivated to register, but not to participate (low conversion rate)? |
Number of new active members | What influences are successfully motivating new members to participate and then to become active members? |
Number of returning active members | Are an increasing number of regular members remaining active? Why or why not? |
Total number of active members | Have new members become active members? Why or why not? |
Total new posts | Is activity consistently increasing? Where is activity greatest (eg, discussion forums, blogs, groups, polls)? |
Average number of contributions per active member | Is this number increasing or decreasing? Should more effort be dedicated to activity of existing members rather than growth? What activities are contributing to increased activity or not? |
aVisitor = someone who has visited the community but has neither registered nor contributed.
bMember (registrant) = someone who has registered with the community but has not yet made a contribution.
cActive member = someone who has made a contribution within a determined period of time (eg, past month).
Periodic sample measurements of the community can also be useful. For example, calculating the number of contributions per active member over a given period can demonstrate whether the activity is shared among many or few members, identify the community leaders, and discover who is contributing infrequently. Speed of response, how much response, and what kind of response should be monitored. As mentioned earlier, the quicker that members receive a response, the higher the sociability of the community, which usually leads to more activity [
It can be useful to know who is participating in the community. However, gathering all demographic information during the registration process is ill advised—doing so can be a barrier to participation. Instead, members who fill out their profile can be used as a measurement of engagement and sense of community, ie, a measurement of initial successful engagement. Members who have not completed their profile provide an opportunity for community managers or recruited volunteers to contact them and obtain valuable feedback about why they have not completed their profile. Perhaps there is a usability issue or the member needs encouragement or mentoring to feel part of the community.
One could also consider surveying the community to assess its sense of community. As mentioned, Chavis et al developed a sense-of-community index, which Blanchard adapted for online community use in 2007 [
Many health organizations are most concerned about disclosure of personal health or other sensitive information and the proliferation of misinformation [
Clearly stated policies make it easy for moderators to modify—and in some cases remove—posts that contravene terms of use, such as commercial postings, advertisements, or impersonations; posts that relate to illegal activity; those that contain disrespectful language, etc [
Community managers, moderators, and core members model behavior and can guide members who may have unwittingly shared sensitive information or misinformation. This modeling establishes and maintains the desired tone of a community. Communities with a secure sense of community can rely on responsive self-policing to correct misguided behavior and misinformation. In fact, rather than removing misguided information, allowing and enabling community members to correct misconceptions and provide balanced debate can be a very productive bonding opportunity that deepens the sense of community and establishes the value of collective knowledge. On hcsmca’s LinkedIn Group page, a marketing manager made a commercial post about her company’s upcoming patient experience conference that did not include patients. This contravened the community’s principle of including patients. The ensuing conversation demonstrated hcsmca’s community cohesiveness, resulted in an informative discussion, and deepened the community’s sense of purpose and influence [
Clinical study recruitment may be desirable in some health communities. If so, guidelines and criteria about how, what, and where to post for recruitment should be readily available for researchers to consult. Recruitment policies may change as a community matures. For example, a request for photo subjects was posted on Virtual Hospice when the community was just starting out [
As these examples demonstrate, undesirable behavior does happen in online communities, but responsive community management can maintain the integrity, reliability, and value of the collective community knowledge.
The bigger issue challenging the success of online communities is the failure to recognize the time and effort required to build a thriving and reputable online health community. Building a community takes organizational commitment as well as sustainable financial and human resources throughout the community’s life cycle [
Most of the practices discussed in this paper are not unique to health communities. However, establishing an online health community’s purpose and its members’ motivations helps community managers modify these practices to tailor the engagement tactics for online health communities. As people increasingly turn to online health communities for information and support, it is vital to realize that community management is more than just moderation (see
Online communities mentioned in this paper.
A 12-point summary to building a successful online community.
Association of Cancer Online Resources
Health Care Social Media Canada
The author would like to thank Jacqueline (Jackie) L Bender, PhD, for her encouragement to submit the abstract for the presentation to Medicine 2.0, 2012, and for her review of this paper. Jackie is a postdoctoral research fellow at ELLICSR Health, Wellness, and Cancer Survivorship Centre and a member of the Phi Group at the Centre for eHealth Innovation, University Health Network, Toronto, Canada. The author would also like to acknowledge Richard Millington, Founder of FeverBee Limited, an online community consultancy and professional community management learning course, for contributing much of the reference material for this paper and for his ongoing mentorship.
Colleen Young was the winner of the JMIR Medicine 2.0 Award 2012 at the 5th Medicine 2.0 World Congress on Social Media, Mobile Apps, and Internet/Web 2.0 in Health, Medicine and Biomedical Research at Harvard University. This award provided a waiver of the article publication fee by JMIR Publications.
The author thanks the JMIR reviewers who provided valuable suggestions.
None declared.