PatientsLikeMe. Necessity being the mother of invention, it makes sense that the inspiration for PatientsLikeMe came to Jamie Heywood and his cofounder-brother, Ben, while watching another brother, Stephen, fight to outlive the progression of ALS. Having failed to find a cure for Stephen’s illness (their remarkable effort is chronicled), the Heywoods, and cohorts, quickly shifted their focus to address a problem that could be solved: the need in patients and families for expandable sources of information and support, that can also be accessed quickly. That’s a social network. So the Heywoods built PatientsLikeMe. It allows patients to leverage their individual knowledge and experience for the benefit of many, or even just one. As an example of patient empowerment, it is a romantic triumph. But this innovation has a hard benefit, too. It demonstrates the “asset value” that patient-knowledge can be for the system: doctors treat based on data and experience, so sometimes they tap the network to problem-solve, too. Free to users, sells anonymized data for revenue.

"PatientsLikeMe is changing the rules in medical care by giving patients in depth information on outcomes, treatments and symptoms that they can use to make more effective decisions on managing life changing illness.  What we measure we improve."