VIDEO: Patient Voice winners driven to create global advocacy solutions, education for IBD
Click Here to Manage Email Alerts
In this video, members of the South Asian IBD Alliance, which received Healio’s 2023 Patient Voice Disruptive Innovator Award, share how their initial goal to dispel cultural stigma has grown into a space for community, support and advocacy.
The South Asian IBD Alliance (SAIA) took shape as a private Facebook group created in 2021 by Tina Aswani-Omprakash, MPH, to honor her father. A partnership between IBDesis — a group of South Asian patient advocates — and multidisciplinary physicians followed and led to the current patient-clinician collaborative.
“We felt that there needed to be a community for South Asians to come together and share support, advice and factual evidence that we could use to help our personal journeys with IBD,” Sharan Khela, SAIA’s director of digital engagement and member of IBDesis, told Healio, noting that SAIA also is a supportive space for caregivers.
“What drives our work at South Asian IBD Alliance, as well as our patient advocacy arm IBDesis, is the fact that IBD is now a global disease,” Madhura Balasubramaniam, IBDesis member and SAIA’s secretary and director of the patient outreach and advocacy committee, said. “We have seen studies demonstrating that there’s an incredibly high incidence and prevalence rate among South Asians. This drove home the message for us that as a global disease IBD also needs global patient advocacy solutions and global patient and clinician partnerships.”
Moving forward, IBDesis will continue providing educational resources for the South Asian IBD community, including livestream programs and virtual support groups, and aims to host local in-person events throughout the year.
“As one of SAIA’s flagship features, our patient education programs bring together patients and clinicians from across the world to elevate disease state awareness, address country-specific challenges patients experience and destigmatize IBD medication and surgery among South Asians across the world,” Balasubramaniam told Healio.
The 2024 Healio Patient Voice Award winner will be announced this October during the Healio Disruptive Innovators ceremony at the AGA annual meeting in Philadelphia.
Collapse
Healio Interviews
Read more about
Click Here to Manage Email Alerts