#justB: Capturing personal stories to overcome stigma

For many years, the Hepatitis B Foundation has advocated for people living with hepatitis B, but due to stigma, the patient voice had largely been missing. In 2016, the Hepatitis B Foundation made it a priority to find ways to showcase the stories of patients and families impacted by hepatitis B. They launched #justB, a campaign that shares powerful, personal stories of people who have been affected by hepatitis B and want to share their experiences to educate communities and inspire action.

The issue

An estimated 2.2 million Americans are chronically infected with hepatitis B virus (HBV), a disease that is silent and largely undiagnosed, but preventable and treatable. Worldwide, hepatitis B is the most common serious liver infection and the leading cause of primary liver cancer. The most critical steps to saving lives are early diagnosis and linkage to care. Unfortunately, an estimated 70% of Americans (or 1.4 million) are unaware that they are chronically infected with HBV and have an increased risk of liver failure, cirrhosis, and/or liver cancer. HBV is also associated with significant health disparities in the U.S., where Asian American, Pacific Islander, and African communities comprise 80% of the chronic hepatitis B infection burden.

The campaign

 

For many years, the Hepatitis B Foundation has advocated for people living with hepatitis B, but due to stigma, the patient voice had largely been missing. In 2016, we made it a priority to find ways to showcase the stories of patients and families impacted by hepatitis B. After attending an informational webinar on digital storytelling hosted by StoryCenter, we developed an outreach, education, and advocacy project centered on personal stories and established a partnership with StoryCenter. In collaboration with the Association of Asian Pacific Community Health Organizations (AAPCHO), we conducted outreach through our partner networks across the U.S. and identi­fied people interested in sharing their hepatitis B stories.

In 2017, we launched #justB, the first national, multi-lingual storytelling campaign to humanise the problem of hepatitis B. The campaign shares powerful, personal stories of people who have been affected by hepatitis B and want to share their experiences to educate communities and inspire action.

Through our partnership with StoryCenter we coordinate workshops where participants connect with others directly affected by HBV, learn how to share their stories for education and advocacy, and create short videos for the #justB campaign. The workshops, facilitated by StoryCenter, guide participants through the process of sharing their stories and receiving feedback; writing scripts and recording voiceovers; compiling photos, video clips, and music to illustrate their stories; and combining these pieces into short videos, or digital stories.

After the workshops, we provide ongoing support, training, and tools/resources for the storytellers to stay in touch, continue sharing their stories, engage in national and local advocacy, organise awareness and screening events in their communities, take on leadership roles, and network with other partners and stakeholders.

Top tips for success


Here is some advice that we would give to other civil society organisations and the affected community who are looking to carry out similar work:

  1. Seek out partnerships: We are grateful for our ongoing partnership with StoryCenter; their expertise in digital storytelling and experience working on projects related to public health have been critical to the success of the #justB programme. The storytellers have benefited immensely from the opportunity to learn StoryCenter’s methodology and to be guided through the storytelling process in a very supportive and professional environment. We have learned a lot from StoryCenter about facilitating story sharing and guiding participants in the process of developing succinct scripts for their videos that are powerful and engaging. They also provide high quality video and sound editing.
  2. Think big: We disseminate the stories widely, across multiple platforms, in multiple languages, and in collaboration with other patient advocacy and public health organisations and coalitions, state and local health departments, federal agencies, and more.
  3. Look to collaborate: Through partnering with trusted community organisations and leaders throughout the country, such as AAPCHO and our Hep B United coalition partners, we can better identify, recruit, and engage storytellers.
  4. Think about the long-term: We are keen to ensure ongoing, meaningful participation in the #justB programme, so we continue to provide support, training, and resources to storytellers after they have completed the workshop. We want to engage them in local and national opportunities to continue honing their storytelling, public speaking, and advocacy skills.

Achievements to date

The #justB campaign has achieved so much in just two years. Some of the highlights include:

  • Conducting four #justB digital storytelling workshops in partnership with StoryCenter, training 28 new storytellers from more than 15 states. We will hold our fifth workshop in May 2019.
  • Producing 32 #justB digital stories, with 8 more to be completed after our next workshop. The story bank also includes videos in Mandarin, Cantonese, Vietnamese, Korean, Tagalog, Khmer, Twi, Yoruba, and Mongolian.
  • Huge social media engagement with the #justB stories has resulted in over 1.25 million video views and hundreds of likes and shares since the launch of the campaign in May 2017. We coordinate efforts to disseminate the digital stories to a wide audience and to promote the #justB campaign through a variety of media channels.
  • Engaging the storytellers in advocacy trainings; Congressional meetings, briefings, and receptions;  conference presentations; webinars; and opportunities to provide patient testimony for community partners, national and international organisations, and federal agencies, such as the U.S. Food and Drug Administration and CDC’s Advisory Committee on Immunization Practices. We also incorporate #justB story postcards into our “leave-behind” materials for Congressional and federal agency meetings, showcasing the power of constituent stories when communicating with legislators and government officials .

 

Challenges

The biggest challenge we face is in identifying and recruiting potential storytellers who are willing to speak out publicly about hepatitis B. This may be due to several factors including stigma, fear of discrimination, language or cultural barriers, scheduling conflicts, and location.

We have learned from these challenges and have adjusted and expanded our recruitment strategies accordingly. For example, while continuing to reach out to existing partners in targeted cities/states, we are making new connections with national and local organisations and community leaders who can help promote the workshops. We also created new custom recruitment materials/images to reach a wide and diverse audience through our social media channels. Additionally, we increased the visibility of the #justB campaign and promoted upcoming workshops through webinars, partner newsletters and listservs, and guest blog features.