A UK-based company that develops rare disease education and services for the developing world wanted to identify problems impacting the care patients with rare diseases receive in resource-limited countries across Africa.
Rare Disease Task Force – Africa
The company formed a task force of rare disease clinicians and patient groups in Africa to identify issues surrounding rare disease diagnosis and treatment, and then attempt to find solutions. Objectives included:
- Allow clinicians and patient advocacy groups to collaborate with one another
- Collect information to develop models and support the evolution of services for the African rare disease community
- Gather input on diagnostic capabilities
The company used Within3 to hold a 29-day virtual session for the task force to work toward its goals. The virtual engagement platform enabled task force members in 23 countries to contribute at their convenience, without travel. Prior to the session, task force members received an email with a pre-recorded training video and slide deck with instructions on how to use the platform. This eliminated the need for a live webcast, which could be compromised by sporadic network access.
Task force members participated in conversations by using engagement features like replying and tagging. Within3’s draft auto-save capability allowed advisors to continue commenting where they left off in the event of lost internet connectivity. The platform also provided auto-translation for non-English-speaking task force members.
Task force members
During the over-time meeting, a high level of engagement from both moderators and task force members yielded a robust online discussion. Participation was much higher than expected – although the company expected a participation rate of about 50%, actual participation was more than 80%. Due to the high quality of discussion produced during the session, the task force successfully outlined four specific topics to include in future sessions:
- Establishing a definition for rare diseases in Africa
- Development and adoption of specific rare disease treatment guidelines
- Gather information around genetics and diagnostics
- Determining registries and surveillance definitions