- Open Research Exchange (ORE) is an online patient network that was developed to share new health measures based on real-world patient experiences.
- Actelion is the first pharma company to use ORE to create a measure for a rare condition.
- PatientsLikeMe has more than 250,000 members.
Increasingly, pharma companies and researchers are looking to patients to get feedback on their experiences living with and managing their diseases. This information can be used to design better clinical trials that produce meaningful clinical outcomes with respect to the patient experience.
According to Actelion’s Senior Director, Mitchell Nogoa, “As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly.” PatientsLikeMe has published more than 50 peer-reviewed research studies, according to PharmaTimes.