Brothers Jamie and Ben created PatientsLikeMe - a plaftform that connects ALS patients

The concept for PatientsLikeMe was birthed from the personal experiences of its co-founders, the Heywood family. One of the brothers, Stephen Heywood, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in 1999. The Heywoods, including Stephen's brothers Benjamin and James, sought out the best treatments and potential cures for Stephen. They recognized the value of shared patient data and insights in addressing conditions like ALS.
Platform Features:
- Symptom and Treatment Tracking: Patients can input data about their symptoms, medications, side effects, and other treatments.
- Condition-specific forums: These allow patients to discuss their experiences, ask questions, and offer support to others.
- Research Opportunities: Patients can opt to participate in research studies based on the data they provide.
- Treatment and Symptom Reports: Aggregated data is used to produce reports that can inform other patients about the efficacy and side effects of specific treatments.Data-Driven Research: By gathering patient-reported outcomes, PatientsLikeMe provides valuable data to researchers and pharmaceutical companies. This data aids in understanding diseases better, improving treatments, and focusing on what patients really need.
Privacy: Even though the platform is about data sharing, privacy is a core concern. Patients can choose how much they want to share and with whom.
Impact: The platform has grown substantially since its inception, with members representing over 2,800 conditions. It has been instrumental in producing several research studies. For example, in 2011, data from PatientsLikeMe was crucial in a study debunking the claimed efficacy of lithium carbonate in treating ALS.
Monetization and Partnership: The company has formed partnerships with pharmaceutical companies, offering access to its data (while protecting individual privacy) for a fee. This business model has sparked debates about data ethics, but the company maintains that it's essential for maintaining a free platform for its users and driving research forward.
The idea behind PatientsLikeMe is the belief that when patients share real-world data, collaboration on a global scale becomes possible, and better outcomes can be achieved for everyone. Over the years, it has become a significant tool for many patients worldwide, providing them with the information and community support that may not be readily available elsewhere.

More information at: https://www.patientslikeme.com/
https://www.youtube.com/watch?v=ln6p4I6qPB4