Care Beyond Diagnosis co-founder Yanique Donohue was introduced to the rare disease world in the same way many other families become part of the community: a family member was diagnosed with a rare condition. Although Yanique’s brother enjoys a healthy life today, his diagnosis affected the entire family and even necessitated a move from South Africa to the United Kingdom to seek answers. Perhaps most frustrating, the cause of his symptoms was never determined – a familiar experience for those who live with a rare or poorly understood disease.
Yanique and her husband Jeffrey established Care Beyond Diagnosis in 2016 to help patients in the developing world who are dealing with a rare disease diagnosis and the host of social, physiological, and economical needs that can affect the overall well-being of the individual and their family. “We are working to create rare disease guidelines for and by the patient population in concert with the expertise of providers and interested industry organizations,” said Jeffrey. This task requires massive coordination among many individuals, patient advocacy organizations, and rare disease clinicians located miles apart – a daunting task even in today’s connected world.
Creating confidence through virtual engagement
Collection, analysis, and dissemination of patient data are among the top challenges for addressing rare diseases in developing nations. Technology workarounds have limited impact when guideline development requires dozens of clinicians spread across several countries where Internet connectivity and ease of travel is never guaranteed.
“We use Within3 as our primary means of collaborating with our steering committee of experts within a specific disease,” said Jeffrey. “Following an initial live introduction or video recording, our over-time sessions are typically open for two weeks to allow committee members to join the conversation at their availability.” At the close of a session, Care Beyond Diagnosis relies on the resulting transcripts, recordings, and translation capabilities of the platform to assure there is no bias in the captured input. “The post-meeting reports detail engagement metrics and create a playbook for successful future programs,” said Jeffrey. “This creates both clinical confidence and confidence in our work for future engagements with other organizations, including advocacy groups and industry.”
However, Jeffrey adds that it takes more than a platform to build confidence and accelerate results in a virtual environment for global rare disease guideline development. “The team support from Within3 adds a level of professionalism that the experts certainly recognize,” he said. “It elevates our programs that previously would have been executed largely through in-person meetings. Using Within3 for our work likely accelerated our first guidelines by eight to 12 months, even as global travel effectively ceased in early 2020.”
When international travel stopped due to the pandemic, Care Beyond Diagnosis was at a pivotal stage in drafting a guidelines manuscript for publication. “We had to have rock-solid committee engagement,” said Jeffrey. “Email as a sole channel for that work would have been madness. Because we had been running programs on Within3 for about 18 months prior to the first quarter of 2020, nothing slowed us down.”
Guidelines from Care Beyond Diagnosis’s first program were submitted to the Orphanet Journal of Rare Diseases in October 2020. The team expects those guidelines to be available in the first quarter of 2021.
Adding value with Virtual Engagement Program certification
Jeffrey completed Within3’s Virtual Engagement Partner certification program earlier this year and plans to incorporate more virtual meetings in Care Beyond Diagnosis project planning for future programs.
“Given the sizable number of meetings we have run on the Within3 platform, I thought I was getting as much out of it as I could,” Jeffrey says. “It was informative to see how industry users, pharmaceutical companies in particular, use the platform for their work across internal teams. What I learned from the certification program will be especially valuable as we build capacity for our ongoing and future rare disease guidelines.”
To learn more about how a medical education company used the Within3 platform to engage rare disease clinicians and patient advocates throughout Africa, read the customer success story.