PatientsLikeMe

Online patient network and real-time research platform

Stephen Heywood, co-founder of PatientsLikeMe

PatientsLikeMe is an online patient network and real-time research platform that allows patients to connect with others who have similar health conditions and share their experiences. The platform is designed to improve patient outcomes by providing a space for patients to share data about their symptoms, treatments, and outcomes. This information is then aggregated and analyzed to provide insights into various health conditions and the effectiveness of different treatments.

History

PatientsLikeMe was founded in 2004 by Jamie Heywood, Ben Heywood, and Jeff Cole. The inspiration for the platform came from the personal experience of the Heywood family, as Jamie Heywood's brother, Stephen Heywood, was diagnosed with amyotrophic lateral sclerosis (ALS). The founders aimed to create a community where patients could share their health data and learn from each other.

Platform Features

PatientsLikeMe offers several features to its users:

• Patient Profiles: Users can create detailed profiles that include information about their health conditions, symptoms, and treatments. This allows them to track their health over time and share their experiences with others.

• Symptom Tracking: Patients can log their symptoms and track changes over time. This data can be used to identify patterns and assess the effectiveness of treatments.

• Treatment Evaluations: Users can review and rate treatments they have tried, providing valuable feedback to other patients and researchers.

• Community Forums: The platform includes forums where patients can discuss their conditions, share advice, and support each other.

Research and Data Sharing

PatientsLikeMe collaborates with researchers and healthcare organizations to advance medical research. The platform's data is used to conduct studies on various health conditions, providing insights that can lead to new treatments and improved patient care. Patients have control over their data and can choose how it is shared with researchers.

Impact on Healthcare

PatientsLikeMe has had a significant impact on the healthcare landscape by empowering patients to take an active role in their health management. The platform has contributed to a shift towards patient-centered care, where patients are seen as partners in the healthcare process. By providing a space for patients to share their experiences, PatientsLikeMe has helped to democratize health information and promote transparency in medical research.

Criticism and Challenges

While PatientsLikeMe has been praised for its innovative approach, it has also faced criticism and challenges. Concerns have been raised about data privacy and the potential for misuse of patient information. The platform has addressed these concerns by implementing strict privacy policies and allowing users to control their data sharing preferences.

Related pages

• Patient advocacy
• Health informatics
• Patient-centered care
• Online health communities