TREND Community believes that valuable and actionable insights can be gained from the community perspectives and life experiences shared throughout social media, especially when traditional research is sparse, like in rare and emerging diseases.
We’ve developed an ethical approach that empowers communities to turn their online conversations securely and anonymously into real-world data. The TREND Community Voice Report (CVR) is a powerful tool for community members to spread awareness and advocacy, inform their medical and support teams, and inspire further research.
Betsy Pilon, Founder and Executive Director, HOPE for HIE shares how the Hypoxic Ischemic Encephalopathy Community Voice Report impacted her community:
“When my son Max was born in 2012 with Hypoxic-Ischemic Encephalopathy I embarked on the same journey as many parents in my situation in that I began researching the condition in an effort to make informed decisions for my son. When I got involved in Hope for HIE there were only 200 other families. This group became my lifeline.
Eventually we came together to create a non-profit. We built a website and expanded our network, but it wasn’t until we partnered with TREND Community and created a Community Voice Report (CVR) that our cause really took off.
It was a real turning point in the life of our organization. It has been two years since we launched our first CVR, and over the course of those years we have experienced unprecedented growth. We have a seat at every table that was once inaccessible. It was the catalyst to funding opportunities and conversations with industry stakeholders. The CVR has been a pivotal tool in all of our conversations, allowing us to do more work addressing the needs of patients and families.”
If you want to turn your group’s anecdotes into evidence, send us an email at firstname.lastname@example.org to get started.