PatientsLikeMe. Necessity being the mother of invention, it makes sense that the inspiration for PatientsLikeMe came to Benjamin Heywood and his cofounder-brother, Jamie, 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.

Ben on the PLM blog

“Sell, sell, sell” someone recently wrote in a discussion about our business model.  Why? Because they know our goal in selling [data] is to help pharmaceuticals companies, medical device companies, healthcare providers, and others in the industry learn more about patients. We’re giving those companies the kind of information that can help improve the products/services they’re creating for patients."