Bringing social media listening into R&D

After her daughter was diagnosed with Prader-Willi syndrome, Maria Picone used social media listening and AI analytics to find out the best ways to manage the rare disease. Now the insights her company is gathering are helping pharma and regulators fulfil unmet needs in difficult conditions. We spoke to her to find out more.

As pharma comes to understand the importance of real world data, it has started looking for insights in all kinds of places it would never have considered before – especially in rare diseases, when information is usually scarce.

Social media listening company TREND Community thinks that some of the most valuable insights into rare disease can be found in private social media groups such as those on Facebook.

“The conversations that are happening in private groups for rare diseases are often much more informative than in public social media spaces,” says Maria Picone, TREND’s co-founder and CEO. “A group of people who have been talking together about their experiences for five to ten years can tell us a lot about a disease even when there is very little published research.”

• Read the full article in pharmaphorum's Deep Dive digital magazine