On Friday January 21st TREND Community launched its first Real-World Data Consortium in partnership with the gout community.
Stories about the lived experiences of people with medical conditions can be an incredibly powerful tool to raise awareness. When spoken and heard, these stories can be instrumental in defining care, supplement diagnostic tools, and open doors for an improved quality of life.
The great news is that a mountain of first person stories, comments, and conversations already exists onsocial media. TREND uses cutting-edge research techniques to capture these lived experiences.
While storytelling is powerful, it hinges on the ability to communicate and the ability to listen. Not everyone can articulate their needs and experiences in medical language. TREND’s technology translates how we talk about our symptoms, in our own words, into medical terms that we can use to better communicate with our doctors.
Through the power of artificial intelligence, machine learning, natural language processing, and computationall linguistics, TREND Community is harnessing the voices and stories of people living with gout.
Why is this important?
TREND wants to revolutionize the world’s understanding of rare diseases.
More than 12,000 people have joined The Gout Support Group of America Facebook community created in 2015 to support people living with gout and nearly 13,000 members comprise the Gout Sufferers Unite Reddit group created in 2011.
TREND is analyzingyears of conversation including more than 100,000 posts and comments. Through this data patients are revealing the direction of future research and treatment approaches. Utilizing existing dialogue, we are outlining a collective voice and charting their journey.
A quick glimpse at the research shows that topics primarily center around pharmaceuticals (~57%), diet (~38%), and exercise (~5%) for the Facebook group and pharmaceuticals (~56%), diet (~36%), and exercise (~8%) for the Reddit group. The real benefit of this research lies at the heart of that data, the deep dive if you will. TREND uses its technology to provide not just word association, but also context. For example, the polarity of words (positive, negative, or neutral sentiment) can provide community leaders and pharmaceutical companies with detailed insights: What is the community saying, and how are they viewing those issues?
There is little more important than understanding a community’s needs. Listening to the community is no longer limited to one-on-one conversations, surveys, and panels. The conversation taking place in closed groups and in open forums is the frontier of the patient voice. A story is powerful and can transform lives. The collective story can guide communities.
Who will be listening to the community’s voice?
Thanks to the following stakeholders participating in the Gout Real-World Data Consortium:
The Gout Support Group of America
Global Healthy Living Foundation
Stayed tuned. More insights to come!