Share: The Birth of a March of Dimes Online Community

In 2004, the March of Dimes created a new online community to support their mission to improve the health of babies by preventing birth defects, premature birth, and infant mortality.

With over 7000 members, the Share Your Story online community provides a platform for parents to share information and support one another. The most recent version of the community includes the ability for each member to have a blog, which has added a fascinating and well-adopted dimension to the community’s toolset. This paper is the story of designing and building Share.

The March of Dimes is a large, US nonprofit whose mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. In 2003, the March of Dimes started its Prematurity Campaign, a multimillion-dollar research, awareness and education effort to help families have healthier babies.

As part of the campaign, the March of Dimes is working to meet the needs of parents who have a baby in a neonatal intensive care unit (NICU). During this stressful time, parents often find that their peers offer invaluable information and essential support.

At the same time, the March of Dimes has been inspired by the Howard Dean presidential campaign and other online mobilizations that have used online community technologies to build awareness and cooperation and to raise funds. Why not create an online community to serve the needs of parents who have a baby in a NICU?

Projects like this often require a small and committed group of people to create and follow through on a vision. The staff at the March of Dimes saw the possibility and created a team to generate a vision for the community and build support within the organization to get it started. It worked! In April 2004, the March of Dimes’ new online community Share Your Story began its gestation.

From early on, the team was concerned about scalability and the level of organizational participation that would be required. Team members contacted other nonprofits to discuss online community design and staffing requirements; they used this information to set expectations for managing the community.

Building Share’s Technology

The original vision for Share (as the community came to be called by its members) was to enable members to share their stories and support one another. The online community would provide an inviting, safe, and warm place for members to share personal thoughts.

With this vision and organizational endorsement, the team turned its attention to the enabling technologies. While online discussions were a requirement and the logical starting point, the Share team also saw an opportunity to use weblogs or “blogs” as a platform for members to tell their stories on a continuing basis. The technology needed to handle both discussions and weblogs in an integrated environment. It also had to be customizable to fit March of Dimes Web standards and branding.
Lee LeFever of Common Craft worked with the Share team to select a toolset and lay the groundwork. Lee was looking to balance the opportunities of new technologies with usability and the right amount of simplicity. At the time, Web Crossing and Akiva WebBoard both offered the functionality, but the Akiva weblogs were not as mature. The team selected Web Crossing, an established community-platform provider with hosted, customizable discussions, blogs and wikis.

The Share team created a prototype for the community with simple customizations for look and feel. It included discussion boards for the full community, blogs for March of Dimes Ambassador families, and the Dimes Blog, a behind-the-scenes look at the organization.

The team did not initially offer blogs to the entire community because it did not know if members were familiar and comfortable with blogs. No wizard was in place, making blog creation complex. In retrospect, providing some blogs but not opening them to all members may have contributed to their later adoption. Members could see and experience blogs and, at the same time, use discussions as the primary means of connection. When member blogs were added almost a year after launch, they did not compete with discussions, but filled a separate need that discussions could not fill.

With the completion of the site, Share was born on September 1, 2004, and the doors were opened.

Marketing and Opening the Community

As Share prepared for its first steps, BzzAgent donated a “buzz campaign” that provided the catalyst for driving initial membership. The development team invited volunteers and friends of the March of Dimes to log on. March of Dimes public service announcements and materials included information about Share.

Every day, new members joined the community. Connections were made and community was forming. By mid-October, Share had over 1,000 registered members. By Prematurity Awareness Day, a national educational event to raise awareness about prematurity in mid-November, 2,000 members had registered, and many more were visiting the site.

Social Architecture

Share began informally, giving members the freedom to express themselves as individuals. The main areas were Share Your Story, Message Boards, and the blogs.

Like many new community sponsors, the Share team’s first inclination was to build a structured set of discussions and hope that they fit the members’ needs. Instead, they chose to let the members decide the focus. This enabled the community to emerge based on usage, not guesses.

Personal introductions provided a first look at community members, their needs and expectations for the site. When a need emerged, members themselves created new discussion topics.

As the community grew and discussions diversified, the Share team at the March of Dimes grouped related topics into new forums, such as Poems and Stories and Feeding and Nutrition. This enabled the navigational structure to emerge based on the needs of members.

In the Share Your Story section of the site, which used the discussion-tool functionality, members described their family’s journey through the NICU. They expressed the joys and sorrows they experienced, creating compelling stories for both readers and writers. Often members would say, “No one knows what I went through except another parent who has gone through it.” These stories were the proof. With over 1,200 stories shared in the first six months, members formed deep and compassionate connections.

Message Boards became a catchall for everything else that emerged: social interaction, medical questions, resources, poems, and March of Dimes events, such as Prematurity Awareness Day. This area quickly grew into a tangle of discussions, many of which stayed active over time.

The early versions of the blogs were the third major feature of the site, but one that existed as a folder, or distinct area, within Message Boards. March of Dimes Ambassador families were invited to start their own blogs. They wrote about their children and their work in helping spread the mission of the March of Dimes. These blogs offered members a window into the organization via its volunteers. To highlight National Prematurity Awareness Day, the March of Dimes created a blog to chronicle the event’s activities.

Moderation

For a range of reasons, most online communities launched by businesses and organizations include moderators and/or a community manager. Because the discussions in Share often focused on medical and psychosocial issues, five March of Dimes health education staffers read every post and responded on an as-needed basis. This ensured that the community had the information it needed and also prevented the spread of misinformation. Early on, the March of Dimes was concerned about the amount of staff time required for moderation. Each of the five moderators reviewed posts one day a week, spending on average 1-2 hours monitoring the site. The site’s community manager also reviewed posts and addressed general community issues.

When it came to ongoing discussions, the moderators looked to the community—and the community led the way, evolving a ”community culture.” Early members became very dedicated and self-policing—solving their own problems. They became community leaders. One group began to refer to themselves as PoPs (parents of preemies). Together, they worked hard to welcome every new member and to respond supportively to each new story.

The March of Dimes team was protective of the community, ensuring that members would not get strong-armed into donation or volunteer streams. In the spirit of community ownership, the staff was also reluctant to get overly involved in conversations, fearing that members would feel controlled or dominated. This hands-off strategy allowed the community to develop successfully, but later the team would learn that their participation was a necessary part of the experience for members.

The Share Team Gets Involved

After the first few months, the Share community matured and stabilized. Share was providing significant value to members, and they were grateful to have the resource. The Share team found that whenever they posted messages, members would respond with multiple heartfelt thank-you’s. This was the first indication that members sought more participation from the March of Dimes.

While the March of Dimes staff initially took a “hands off” approach, a few team members began to get involved in the community, sharing personal information and pictures. Members greeted their participation with incredible warmth, reinforcing the value of March of Dimes involvement.

As time passed, members made it clear that they wanted to have more contact with March of Dimes representatives and to help the organization achieve its mission. Members did not see the March of Dimes as a faceless institution. Rather, they viewed the staffers as teammates, working with them to achieve the same goals.

Share Grows Up – Redesign

At the end of 2004, the Share community continued its growth. It was time to evaluate the first part of Share’s life and consider what was next. Despite some usability issues and organizational problems, members were happily and consistently using the original site. The connections and support they were finding made up for any problems with navigation or design.

For the Share community, the technology was secondary to the connections. But the possibilities of improvements were worth exploration and investment. Growth was straining the existing navigation scheme. It was time to explore if a richer design would make a difference as the community grew.

In early 2005, Nancy White of Full Circle Associates joined the Share team. Nancy and Lee evaluated the site and asked the community what they wanted and observed. The team conducted telephone and e-mail interviews with new and experienced members. Feedback on potential features was gathered via discussion threads on Share. This assessment was extremely valuable. Members revealed a number of unmet needs and wants.

For example, members wanted a link to their story or blog to be a persistent part of their Share identity as they found the stories to be a valuable tool for connection. Because of this suggestion, whenever a member creates a blog or short story on the redesigned Share site, a link is added to that person’s profile. In this way, a member participating in a discussion can find the blogs and short stories of other members by clicking on their names across the site.

Community feedback became the foundation for a major site update and reorganization. By February, membership had passed 4,000, and the team dug down to create a new integrated look, feel, functionality and social design.

The challenge was to add features and fix problems without disturbing the primary ways the members were using the site. The revised design needed to build on existing strengths and create new opportunities with technological and organizational improvements.

Using data from the users and a thorough site review, the team created a plan to update the site with new, integrated graphics; reorganize the content that was growing out of control; and add the capability for users to create blogs.

“Showing work in progress” was a key practice during the redesign. As artist Susan Lyons drafted a new graphic look, she shared screen shots with the community for feedback. As the development team considered new features, they asked members for their ideas. This exchange provided important input, kept the community informed, prepared members for upcoming changes, and gave them ownership of the work.

Since the redesign, community members have also served as an ever-ready focus group for other March of Dimes ideas and projects. They have become a world of “virtual volunteers.”

Throughout redesign and implementation, excitement was building in the community. In the end, the new design included:

1. A new look and feel with integrated graphics and icons
2. A more logical grouping of the site into four major sections (see below)
3. A focus on member-created blogs
4. Improved personal information and navigation

The site moved from having two major sections to four, reflecting the emerging needs of the members.

The new sections are:

• Community Center: A place to get help with the site, find out what is happening in the community, make introductions and “hang out”
• Share Your Story: A place for members to describe their experiences as a one-time short story or an ongoing blog
• Parent-to-Parent: A collection of topical discussions important to parents (for example, health issues, coping)
• Get Involved: A place for members to support the work of the March of Dimes

Building the Blogs

The addition of member blogs offered a series of challenges. One of them was features. In creating the blogs, what options should the members have? Should a navigation column with a blogroll be enabled? What about blog categories? In the end, the team chose a simple approach with no columns and only two options for the user: the blog title and the URL shortcut.

Another challenge was to customize the Web Crossing blog feature so that it was both easy to use and distinctive from the discussions. Enabling members to easily distinguish blogs and discussions was an important design priority. Through clear labeling, graphic design and communication, the blogs were differentiated and accepted by members as a different resource.

Relaunch and Birthday Party

On July 26, 2005, the new version of Share went live to strong community acclaim. The team originally envisioned a closed beta with a select group of testers. Instead, they chose to do the beta publicly, much like the development process. Members were invited to help identify and squash bugs, which they did in impressive numbers. As with the original version of Share, they were primary owners of the new site, and their participation was essential.

As Share turns one, it is clear that this is a strong, healthy baby. The site is functioning well, and plans are already afoot for another round of tweaks. As of August 2005, membership is nearing 6,000. In less than a month, over 70 members have created blogs. About 100 new people per week are joining the site, and a second marketing effort is being planned.

Most importantly, the members are as dedicated as ever to providing each other with a supporting and caring environment.

This is a message from Darcy which captures her perspective on Share:

The future of online communities for the March of Dimes is bright. The organization hopes to create a Spanish-language site touching on a broad range of pregnancy and birth issues as well as a community for people affected by birth defects. Share is a great model that can be replicated to support other aspects of the March of Dimes mission.

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Note: This case study or “story” is from Lee LeFever of Commoncraft and I. We created it in part to document the birth of the Share Your Story community, in part to share what we learned, an in part for the Global PR Week event this past September. We are both posting it on our blogs as a sort of “collaborative” share!