Imagine being newly diagnosed with a condition and the distressing realisation that there is little information available about it. For people with rare and invisible diseases, this is often their reality, and in the hope to gain information and connect with other sufferers, they often turn to patient influencers to bridge that gap.
In early 2019, we conducted a self-funded study to shine a light on patient influencers and examine the flow of information into and out of their ecosystems. Our novel approach took us through several key environments and we were able to observe some interesting patterns, as well as hear some moving stories from patient influencers in the rare disease non-ketotic hyperglycinemia (NKH) and chronic migraine.
The findings from this landmark study were debuted at the Intellus Worldwide Summit last May. To recognise UK migraine awareness week 1-7th September, we shared this webinar in conjunction with chronic migraine sufferer Lucy Wates, as well as our technology partners at RealityMine to present the findings to a wider audience.