Planning and launching a new champions program – and online community platform – at the Michael J Fox Foundation

Over the last few months, we’ve been working with Josh Gottesman and Leslie Kirsch at the Michael J Fox Foundation to plan a new online community of practice intended to support conversations about the sharing and reuse of data related to Parkinson’s Disease Research. 

As is the norm for many community projects, we’ve been taking a phased approach to the launch of this Data Community of Practice (DCoP) – working to understand the needs of the nascent community and then identifying a small group of community champions to help test the online platform and seed initial conversations before opening the community to a wider membership. 

In this blog post, we share more about how we supported MJFF through member research, the selection and design of a new online community platform, resource creation and scaffolding for their new Data Community Innovators (DCIs) program, and the planning and hosting of a DCI kick-off meeting at MJFF’s offices in NYC.

9 individuals stand in a row, smiling with their arms around each other, on a roof top. The New York City Skyline stretches behind them, under blue sky with a few white clouds.
The MJFF Data Community Innovators in New York City at the DCoP kick-off meeting. Photo credit: Maya Sanghvi/CSCCE.

Member research to understand needs and perceptions

Last year and through this year, MJFF staff conducted a series of one-on-one interviews with Parkinson’s Disease researchers in a range of settings to see if there were unmet needs that a new community of practice (CoP) could support. When we joined the project, we took some time to analyze the data from the interviews, identifying emergent themes, incentives, and challenges that MJFF might seek to address. 

We were particularly interested in understanding the specific use cases that might bring someone into a community of practice focused on questions of data sharing in Parkinson’s Disease research. This kind of information can help a community manager design content and programming that meets member needs, as well as highlighting communications channels (e.g., newsletters and listservs) that could be used to tell people about the new community. 

We also wanted to know what barriers exist that might prevent people from engaging with a new community. These might include existing norms around technology and communication, or concerns of intellectual property, access, or time. Knowing these potential barriers helps inform the types of platforms that the community would feel comfortable using, as well as what kinds of scaffolding they might need to get started. 

Lastly, these interviews gave us a basis from which to plan an in-person kick-off meeting. We knew more about what folks were hoping to get out of this nascent community of practice, what topics were of interest, and the ways those topics intersected with using the new community platform. 

Using our Making a PACT framework to plan the in-person event

Part 1 of our 4-part guide to creating engaging virtual events includes a framework that can also be applied to in-person gatherings. We start with the Purpose, then consider who will be Attending, how we will instill a sense of Community and build connections, and last what Technology will best support the event (in the case of our in-person event, this also included a stack of multi-colored sticky notes and multiple flip charts!). 

Check out CSCCE’s making a PACT guidebook – which also forms the basis of a workshop we frequently deliver for our clients and collaborators. 

Working with MJFF staff, we were able to weave what we’d learned from our member research to use the PACT framework to design an in-person kick off event that supported:

  • Creating a sense of shared understanding about what challenges the DCoP could address
  • Socialization of the new community platform and gathering feedback about it
  • Building enthusiasm and momentum for future activities – including brainstorming what those might be and who was most interested in each

By leaning into our existing experience of working with data science communities, we were able to plan an event that combined communities of practice theory with activities rooted in the research data lifecycle.

Selecting a new online community platform

Simultaneously, while engaging in member research and meeting planning, we also helped with the identification and selection of a new online community platform for the DCoP.

Starting from scratch can be exciting, but intimidating. There are a lot of great online community platforms available, all offering variations on a theme (threaded discussions, DMs, live video chat, integrations, etc.). Choosing the right one for your community means doing your research: What do your members want, what can you afford, and how involved can you be with customizing the look and feel of your final choice? 

We worked with MJFF to define the platform functionalities that DCoP members needed, and researched several potential options. We ultimately decided to go with the open-source discussion forum Discourse, and CSCCE staff worked with the Discourse design team to customize the platform based on MJFF’s look and feel. 

We especially enjoyed leaning into the product management and design expertise that we have on the CSCCE team to rapidly stand up a great “beta” version of the new DCoP online platform in good time for the in-person kick off meeting.

Check out CSCCE’s guidebook on selecting and testing online tools for a framework to guide this process, or for more insight into Discourse’s functionality, check out the recap of our recent Tools Trial

Scaffolding to support new community members

Designing a community platform is just one step in successfully launching a new community. Just as when building a new house, new communities need scaffolding to provide support as they grow. We define scaffolding as: 

“The supportive information, activities, and processes that address barriers to member participation and ensure that all members can access and engage in community programming.”

See the CSCCE glossary for more community management vocabulary

For MJFF’s new community, this meant writing a quickstart guide for creating a profile and navigating the Discourse site, seeding the community with FAQs, community participation guidelines, and a member directory, and giving new members guidance for how to introduce themselves. Over the next few weeks, we’ll be building on the momentum created at the in-person kick-off event and adding new topics and discussion threads for members to connect over.

Community scaffolding might look very different in your community. As a community grows and develops, members will often signpost new scaffolding that’s needed (e.g., by reaching out and asking for something or more subtly through repetitive behaviors such as using the same search term that you can spot in usage metrics). Over time, you may also notice that some of your scaffolding is not needed any more (e.g., a welcome video that goes out of date after website updates). Scaffolding can be added, removed, and changed as needed. 

For more on scaffolding, see part 3 of the CSCCE Community Participation Model guidebook

Starting a champions program to kickstart engagement

Community champions are emergent leaders within a community who take on additional responsibilities that help maintain, grow, or evolve the community. In some communities, champions assume these roles organically. In others, community managers instigate community champions programs to empower members with the skills and/or resources to become a champion. 

MJFF’s Data Community Innovators were recruited to help pilot the Data Community of Practice on Discourse. Over the next few months, they will be: 

  • Asking and answering questions about Parkinson’s Disease datasets on Discourse, leveraging different areas of expertise
  • Identifying research topics around which they can collaborate – including using existing datasets to shed light on novel questions
  • Offering feedback on the community platform and identifying future activities on the platform such as private groups, updated notifications and more

We’re excited to be supporting MJFF and the new champions as the community continues to grow – it was wonderful to experience the energy and enthusiasm for the new platform at the kick-off meeting!

Working with CSCCE

If you are looking to set up a new online community platform, start a community champions program, or host an engaging event (in-person or online), consider working with us! We offer a range of consulting services, from member research to developing an engagement strategy, and would love to talk to you about your needs. Please reach out to if you’d like to schedule a 30 minute informational meeting.