Expanding public engagement in HBV/HCV: Crowdsourcing to spur
hepatitis policy
DURATION 18 months
STARTING DATE 1st September 2020
GEOGRAPHIC REACH Global
PARTNER London School of Hygiene and Tropical Medicine, in collaboration with the World Hepatitis Alliance. (WHA)
AIM
The project aims to gather and promote the experience of people living with viral hepatitis. This has not been sufficiently highlighted to either policymakers or the general public, in contrast for example to HIV.
This innovative project aims to support the prioritization and effectiveness of the viral hepatitis response in selected countries with high burdens of viral hepatitis.
CONTEXT
Hepatitis B Virus (HBV) and Hepatitis C Virus (HCV) contribute substantially to global morbidity and mortality. More than 325 million globally are affected by viral Hepatitis B and C, which is 10 times larger than the global HIV epidemic.
Every hour, over 150 people die of viral hepatitis related liver diseases, including liver cirrhosis and hepatocellular carcinoma (1). People in low and middle-income countries (LMICs) are most affected by the two viral hepatitis (2). Africa and Western Pacific Region bear more than 42% of the world’s deaths caused by hepatitis (3).
To address above challenges, public engagement is important for raising awareness of hepatitis, generating community-centered solutions, and informing messages to spur policy change. Nevertheless, the public voice is often ignored, and powerful human stories of viral hepatitis are missed.
Innovative strategies are needed to better engage the public, especially people living with or affected by chronic hepatitis in those regions with a high burden of hepatitis B and C. Crowdsourcing may provide an opportunity to help improve public participation and awareness.
Crowdsourcing shifts traditionally individual tasks to large groups often through challenge contests. By involving the public in multiple stages, such as on steering committees and creating submissions, challenge contests improve public ownership and may help design people-centered health services.
ACTION
The recipient will conduct a global crowdsourcing challenge contest to solicit stories of people affected by viral hepatitis and infographics describing the impact of HBV/HCV.
The project aims to address two key problems: low public awareness of viral hepatitis and lack of high-level strategies targeting viral hepatitis and its related diseases, especially during this unusual COVID-19 pandemic which may pose additional risks to the community.
The project has three phases:
• A global crowdsourcing challenge contest will be held to identify exceptional stories, images, videos and infographics; through engaging the general public, patients diagnosed with HBV/HCV and at-risk sub-groups, to solicit stories that portray reality of living with hepatitis and infographics that illustrate the local burden, gaps in hepatitis care delivery, and economic impact.
• Analyzing solicited data to identify barriers to viral hepatitis prevention and care provision, and locally appropriate solutions; incorporating COVID-19 related themes;
• Multisectoral workshops will be held to celebrate excellent submissions, share problems and solutions, and spur actions.
EXPECTED RESULTS
At the end of the funding period, the project aims to increase community engagement via soliciting personal stories from people living with hepatitis.
The project will raise awareness of the limitations of access to diagnosis and treatment for people living with hepatitis and therefore stimulate interests of leaders in policy changes and/or in generating anti-hepatitis action plans in selected high-burden countries.
CATALYTIC IMPACT
Through engaging key groups affected by hepatitis, working closely with local civil groups and policy makers, the project will catalyze local ownership of hepatitis programs and build capacity for advocacy at regional and national levels. The mentorship program will provide opportunities for further in-country discussions surrounding evidence-based policy changes.
References
1 WHO Regional Office for Africa. Hepatitis. 2019. https:// www.afro.who.int/health-topics/hepatitis
2 Schweitzer A, Horn J, Mikolajczyk RT, Krause G, Ott JJ. Estimations of worldwide prevalence of chronic
hepatitis B virus infection: a systematic review of data published between 1965 and 2013. Lancet (London,
England)2015; 386(10003): 1546-55.9.
Madhava V, Burgess C, Drucker E. Epidemiology of chronic hepatitis C virus infection in sub- Saharan Africa.
The Lancet Infectious diseases2002; 2(5): 293-302.
3 WHO Regional Office for Africa. Hepatitis. 2019. https:// www.afro.who.int/health-topics/hepatitis