With mounting requests for real-life stories in the rare disease community, how can organizations support story sharing and better meet their aims? It’s tempting to simply add a share button to your website and let social media take over. A more thoughtful approach to story sharing, however, may enhance opportunities for our storytellers, patient organizations, and the broader rare disease community.
I. Initial Planning & StrategyDo you have a story strategy and are you clear on what stories you are looking for and how you intend to use the stories you receive?
• Research how other organizations are creatively using stories.
• Consider the variety of settings where your organization is already sharing stories and the types of stories being told there. What impact have your stories had?
• Explore how you might better take advantage of the stories you already have access to. For example, can you request permission to post a story shared in a letter sent to your organization? Can a story presented at a meeting be recorded for sharing on the Internet? Can you highlight a member’s personal blog post about their experience at an organizational event?
• What voices within your community are not being well represented? Identify the missing stories and explain why these stories are important and still needed.
• Come up with a list of specific reasons why you want people to share their stories with your organization.
• Identify the times of the year that are key to your group in raising awareness and where you’d like the stories you share to be most available. Create corresponding timelines that make sense for your calendar of events and advocacy opportunities.
II. Safety & Privacy• Do you need guidelines for deciding what stories you can use and to define necessary limits?
• How will you support potential contributors in considering the pros and cons of sharing for them? For example, you may want to offer a few reflection questions for one to consider before deciding whether or not to share or picking the right story to share.
• Do you have the appropriate consent forms for accepting stories, especially when involving children?
• Are there more private story sharing opportunities your group wishes to offer, such as a sharing circle where participation is limited to a specific segment of your community or a moderated online forum that requires a sign-up and validation process?
III. Before Requesting Stories• What incentives, such as a contest, prizes, training or a specific showcase opportunity, can you offer to contributors?
• Identify the storytelling supports your organization can realistically provide. Who in your organization has the skills to help and what supports will you be able to offer with such tasks as story brainstorming, editing, or layout?
• Offer a storytelling how-to workshop or other type of storytelling learning session tailored to your group.
• Research and share the storytelling resources that are available outside your group.
• Develop opportunities to connect potential story contributors with creative professionals, such as artists, photographers, video editors, designers, and writers, willing to volunteer their time to support bringing stories to life.
IV. Getting Contributions• Have at least one story example to present. It’s intimidating to be the first contributor. Are your group’s leaders willing to set an example by sharing their own stories first?
• Know who you will personally ask to contribute. While broadcasting a request for stories may generate some buzz, when individuals are made to feel that their story is valuable they are far more likely to view themselves as a storyteller and consider contributing.
• Remind contributors of who is in your audience so they can gear their stories accordingly. Suggest potential story themes to help with getting started.
• Be clear about the story format(s) and maximum file size you can receive and use. Consider how best to receive larger files, such as videos.
• Provide a guiding tip sheet and check list where submissions are to be made. Be prepared to make ongoing modifications to this information based on the submissions you receive.
• Establish a submission form to make sure you get all the necessary information upfront. Be clear what information is required versus optional and what details will be made public.
• Test your submission setup before going live and provide another contact option in case contributors are having difficulties or have questions.
V. Managing Contributions• Acknowledge contributions you receive right away, as storytellers may feel vulnerable immediately after sharing. Provide a clear timeline for next steps in the process.
• Give contributors the opportunity to review and approve their story setup before it becomes public.
• Have a plan for both encouraging and moderating comments to a new story. It helps to get the discussion started when the first comment is posted early on.
• How will you be sure to pass along feedback to the storyteller that your organization may receive regarding their story?
• Consider the life of a story. Regardless of the permission you have for sharing someone’s story, is it appropriate for it to stay up indefinitely? Are there opportunities for the contributor to make updates to their story? Can the contributor easily request for their contribution to be removed at a later time?
• Explore a variety of outlets, especially social media, to promote your stories so that they get the attention they deserve once ready for public viewing. Online posting is not enough. How is the community notified when new stories are available? How do you make it easy for people to find your stories online?
VI. Learning & Sharing• Are you able to promote other places, outside your organization, for people to share their stories and or find relevant ones?
• How will you share your storytelling best practices with the rare disease community?
• How will you encourage and recognize your organization’s storytellers? Are there potential positive connections between storytellers your organization can facilitate?
• Make space to listen and learn from all the stories you receive.
• Turn story sharing into an important part of your organization’s culture. Ensure stories are reaching all levels/members of your group. Include stories at your meetings and gatherings. Keep your community connected and motivated through stories.
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