Ahead of next week’s Global Genes Patient Advocacy Summit, we’ve been reflecting on the different patient groups and disease areas the crowd has been challenged to work on over the years.
The ability to focus the crowd’s attention upon a specific, unaddressed problem lends itself extremely well to rare diseases, which often struggle to attract the attention and brainpower needed to make real strides. Two particularly notable programs:
- National PKU Alliance heard patients ask for an at-home testing device that would greatly improve quality of care. In the absence of the market providing a solution, NPKUA is crowdsourcing its development through a series of challenges, as Executive Director Christine Brown outlines in this webinar.
- Frustrated with the research obstacles created by the absence of a known biomarker, Prize4Life challenged the crowd to propose new biomarkers for ALS, ultimately awarding $1 million. In the words of Chief Scientific Officer Melanie Leitner, “Working with InnoCentive expanded our reach to new minds around the world, which would have been inaccessible without this partnership. When we launched what we thought was a neuroscience Challenge we certainly didn’t expect some of the most exciting ideas to come from the fields of dermatology, chemistry, and plant biology and yet that’s what happened. InnoCentive’s Solver network is unparalleled.”
But even more common diseases that receive a greater share of funding and are the focus of many researchers and projects can use some outside perspective from time to time, as the following programs illustrate:
- Harvard Catalyst tapped into the crowd to answer an unusual question: What do we not know to cure diabetes? By crowdsourcing the identification of missing puzzle pieces, Harvard Catalyst got a clear idea of what type of research they should fund going forward, as they described in this reflection.
- In the case of Alzheimer’s, the Geoffrey Beene Foundation Alzheimer’s Initiative identified a lack of attention on the question of male/female differences in how the brain processes the disease, and called on the crowd to propose hypotheses, some of which were funded for further investigation.
- Earlier this year, the Epilepsy Foundation turned to the crowd with a communication challenge, seeking advocacy campaign ideas for SUDEP (sudden unexpected death in epilepsy). Solvers participated in great numbers, with some of the winners sharing personal connections to the disease.
We’re looking forward to meeting more passionate disease champions at Global Genes’ Patient Advocacy Summit next week, and will be keeping an eye out for research and advocacy related problems that the crowd can tackle.
VP Business Development Siobhán Gibney Gomis leads the nonprofit practice at InnoCentive.